Hi guys, this is my first post here. I would like to ask for your advice what to do next. The first symptoms of the disease appeared in autumn 2002, I was 30 years old at that time. I tried to find out what the symptoms were caused by for over 4 years. The result of my research: 3 x negative ELISA, 2 x negative Western blot, positive IgG for ehrlichia, 2 x negative PCR for babesia, negative IgG for Bartonella. My PCR real time for LD: positive in January 2007, 2 x negative (after 8 and 10 months of treatment). EEG - cerebral ischaemia; Doppler of intracerebral artery and CT of head - OK.
My symptoms were not very serious but they made my everyday life difficult: headaches, CFS, tachycardia-especially at night, insomnia, problems with blood pressure, vertigo, numbness of fingers, pain in shoulder joint,lumbalgia, brain fog, significant memory impairment, concentration impairment, disorientation, problems with articulation.
Before the beginning of the treatment and also during the first 4 months of the treatment there usually were few days when I was able to think clearly. I have been undergoing treatment since February. Except for memory, CFS and concentration disorder, all the other symptoms ended after the treatment had begun. The best period was in August; for 3 weeks I felt in 80% as good as before the illness. But then suddenly the state of my health deteriorated and it has not improved ever since. Problems with memory and concentration have intensified and a sense of emptiness in my head has become more acute. From the beginning of my treatment my herxing was weak and there has been no herxing at all for over 2 months.
After the first negative PCR rt for LD (mid-October 2007) my LLMD suggested bartonella. My treatment since mid-September 2007: -tetra +zitro+ tini- 7 weeks - tetra +zitro- rifampin- 12 weeks In mid-December 2007 my PCR rt was negative again - I took mteronidazol before the test. My LLMD decided I am not suffering from borreliosis any more (minor symptoms and negative result). I have been taking rifampin and roxy, waiting for the result of PCR rt on bartonella (it will be available probably at the end of January 2008) and if it is negative, the doctor will suggest the end of the treatment. In February or March the results of PCR rt on ehrlichia and mykoplasma will be available. My body temperature is normal in the morning but it drops during the day and it is low in the evening. I am cold all the time, especially my feet and hands. I have petechiae on my shoulders, chest and back. On my feet there are a lot of very thin, filamentous veins which look like cobweb. At the beginning of December I had CD57 test-the result below:
and vitamin D level: - 25(OH) - my result is 7,9 , the norm is 11-54 - 1,25(O-H)- my result is 49,9, the norm is 15-70
The result of CD57 is very bad but I do not know if it should be taken into consideration because it was only the second such test made in Poland. However, it turned out that I have lymphophemia and too few lymphocytes T. I began taking vitamin D and I feel weird - I feel depressed and I am weepy and irritable - without a reason !! I was in the same mood in spring, when I took bicillin. I thought then my mood was caused by the medicine, however at that time I was also taking vitamin D for the whole month! My problems and questions:
- Does anyone have similar experience concerning vitamin D? I feel bad and I should probably stop taking the vitamin. - My current symptoms, which have not been relieved, despite the treatment, disturb especially my work (I am an academic). I think they can result from the circulatory disorder. Can it be a symptom of ehrlichia? Or maybe it is its consequence and there will be no improvement? My lymphopenia can be connected with ehrlichia...I took tetra for 19 weeks so I think I should not have the bacterium any more. Can it be bartonella? But then why there is no reaction to rifampin? Neither better nor worse, the state of my health is the same all the time. Can these be the symptoms of bartonella? During all the time of the treatment, the state of my health was the best after a month of taking baktrim, roxy and tini... - Or maybe these are viruses (CMV, EBV) which were activated as a result of lymphopenia? - according to Sticker, CD57 test contains subset CD75+CD3-
however other subsets - CD8-/CD57+, are mentioned on forum. What should be assessed?
My PCRs were made in the Research Centre of DNA in Poland, which is beginning to specialize in tick-related diseases and, in this respect, is the best one in Poland (and probably in Europe). Their PCR rt sensitivity is 5 DNA copies.
Since my LLMD has no suggestions, I would like to ask for your opinions what I should do next. I am thinking about SPECT, heparin and PCR on viruses... I wish you all the best in New Year, especially recovering your health.
Posted by Geneal (Member # 10375) on :
Babeisia springs to mind immediately.
I am not sure how accurate PCR is for Lyme in your country.
Here, well.......not very.
My neighbor had a Western Blot done and PCR at the same time.
Was CDC positive both IgM and IgG for Lyme. PCR was negative.
So, what does that tell you?
Babesia testing is not known to be very reliable here either.
My Fish for babesia was negative, yet I had all the symptoms.
I am sure someone can come along with some more advice.
Hugs,
Geneal
Posted by Cass A (Member # 11134) on :
With those Vit D tests, I would be looking into the Marshall Protocol.
Love,
Cass A
Posted by SForsgren (Member # 7686) on :
This is the second CD57 test result I have seen from Poland. I would suggest getting the lab in touch with Dr. S to ensure that the results are valid and they are on the right track. You can PM me if you would like the email address for Dr. S where the lab can contact him. Be well
Posted by Truthfinder (Member # 8512) on :
I'm not seeing anything on the CD-57 link - I just get `errors on page'. Probably just because of the language problem....
My D levels were not good, either, nataszkam...
Vitamin D, 1,25 - Dihydroxy: Result is 49 (range is 15-60) Vitamin D, 25-OH, Total: Result is 16 - LOW (range is 20-100
I actually seemed to feel better when I began supplementing with Vitamin D3, but I was also taking some additional minerals, so hard to say if it was the Vitamin D or not. Also, I started off pretty slow and worked upward slowly with the supplements.
There is someone on the board who recently had a negative reaction to supplementing with Vitamin D, also. I'll check and see if she has seen this thread....
Those Real Time PCR tests sound pretty intriguing....... we don't have those here.
Posted by oxygenbabe (Member # 5831) on :
Posting because Tracy asked: At the end of October my vitamin D levels were low normal (32, 30 is the cutoff). From November to Feburary here we don't make it from the sun so by now they may have become a bit lower.
I supplemented and it had a very bad effect on me in all kinds of ways, insomnia, raciness, stuffed up ears & sinuses became much worse, and bladder sphincter oddly relaxed so urine dribbled (never had that before and it stopped as soon as I was off).
I love sunlight so, either I wait until March, and/or I've been looking into UVB lamps to use at home.
Posted by Areneli (Member # 6740) on :
I wish I could be of some help.
If vitamin D doesn't help you so don't take it at the time. Listen to your body. You may try vitamin D sometime later and your reaction could be good at the time.
Why don't you try Mepron or Malarone as others suggest?
Posted by nataszkam (Member # 14225) on :
Thank you for all your suggestions
Geneal, aren't my symptoms too weak for babesia? I've never had night sweat, for example. My blood has been examined under the microscope by an excellent scientist specializing in babesia and he found nothing which could suggest babesia. I know it's hard to get a positive test, nevertheless, the symptoms+the results from a good research centre mean something. Research Centre of DNA doesn't perform standard PCR - they have developed their own method. Moreover, they apply genetic probes to their tests.
In my opinion: If you have PCR performed while you're on antibiotics and you have the symptoms of the disease, the result must be positive. The negative result would mean the medicine you've been taking is ineffective. If you've got no symptoms after a long treatment, you've got no reaction after the change of antibiotics and PCR is still negative, then the result should be considered reliable. If you wait for 3 months since the regression of symptoms and then you finish treatment, I add to it negative results of PCRs performed monthly.
Cass A, I know I have vitamin D deficiency and that's why I have supplementation. I don't like Marshall Protocol A lot of people in this forum take the vitamin-that's why I've asked about their experiences.
Scott, I think I know whose results you've seen However, my test was performed by other person and it includes other subsets. I was rather concerned with the estimation of lymphocytes B, T and NK. The person responsible for the test tried to perform CD 57 test in accordance with Stricker's publication and that is why he estimated subset CD57+CD3- (my result is 33). And here, in the forum, you write about CD8-/CD57+ as CD 57 test and that's why I don't understand anything I'll try to make other laboratory (the laboratory at the clinical hospital for children) get interested in the test. You've got PM from me
Tracy, this is the link to dr Stricker's article. The article is in English so you shouldn't have any problems, unless you mean the link to my result of CD57 It's vitamin D only that I've begun taking recently so I think my discomfort is somehow connected with it. I'll try to survive for few more weeks.
Oxygenbaby, I feel sorry for you . Insomnia In my case, it's been getting more and more acute recently.... Unfortunately, I don't like the sun, which is paradoxical considering the fact I'm always cold.
Areneli, before I begin babesia treatment, I want to exclude all other possible causes which could give such effects as mine because it's very doubtful whether I really suffer from babesia. Tosho, a friend of mine from the Polish forum, who also writes here, is in the same situation as mine. He has tried treating babesia and there was no reaction whatsoever. What's more, maybe this will seem strange but I do think that our Polish Research Centre of DNA performs PCR really very well and if there's a negative result, the disease can be excluded. This isn't an ordinary laboratory but a team of young scientists who additionally are personally motivated to create the best tests concerning tick-borne diseases. I have a reason to think their achievements have already outdone yours For example, they've introduced quantitative test PCR rt which makes it possible to estimate the number of DNA copies in a given sample (and it can useful during the treatment). And they use genetic probe.
I'd be very grateful for any further suggestions.
Posted by B R H (Member # 12159) on :
quote:Originally posted by oxygenbabe: I supplemented and it had a very bad effect on me in all kinds of ways, insomnia, raciness, stuffed up ears & sinuses became much worse, and bladder sphincter oddly relaxed so urine dribbled (never had that before and it stopped as soon as I was off).
I love sunlight so, either I wait until March, and/or I've been looking into UVB lamps to use at home.
So despite oral vitamin D having a "very bad effect", you still plan to supplement your vitamin D with exposure to UV radiation? Did you ever test your 1,25 D?
Posted by nataszkam (Member # 14225) on :
Hi guys,
My PCR on Bartonella henselae is positive Posted by B R H (Member # 12159) on :
quote:Originally posted by oxygenbabe: Posting because Tracy asked: At the end of October my vitamin D levels were low normal (32, 30 is the cutoff). From November to Feburary here we don't make it from the sun so by now they may have become a bit lower.
I supplemented and it had a very bad effect on me in all kinds of ways, insomnia, raciness, stuffed up ears & sinuses became much worse, and bladder sphincter oddly relaxed so urine dribbled (never had that before and it stopped as soon as I was off).
I love sunlight so, either I wait until March, and/or I've been looking into UVB lamps to use at home.
You say vitamin D had a "very bad effect" yet you plan to keep supplementing vitamin D with UV lamps? Classic NEURO borreliosis.
Posted by B R H (Member # 12159) on :
You really should do some reading at the Marshall Protocol website as your symptoms & test results seem to be a good fit for that treatment.
Your vitamin D test results are unusual, indicating dysregulation that could be caused by a cell-wall-deficient bacterial infection. The vitamin D receptor plays a key function in the innate immune response. Despite supplementing with vitamin D, your 25-D remains low. Obviously adding vitamin D is not doing what it is supposed to. There is an underlying root cause of this dysregulation that must be treated before your innate immune system will work properly again & eliminate the infection.
Posted by lou (Member # 81) on :
It is my understanding that the Marshall Protocol only works on some people, and that the D testing can predict which ones will benefit. The results this person had on his test don't sound like the ones that predict a good effect. BRH, you should be more careful about recommending this treatment for everyone.
Vit D, the form that tested low for him, varies seasonally. So, you would really have to see what the results were in winter and in summer.
Bartonella does not always respond to the drugs that are currently being used to treat it. There are published articles to show this. I will try to find them again if you are interested. A positive pcr for bartonella suggests to me that your particular strain/species needs something different. The problem is that some of those treatments can have bad side effects, like the fluoroquinolones (levaquin,etc) which may damage tendons, and gentamycin, which can cause deafness.
I am also wondering if there might be an unsuspected virus involved. In Russia, ticks can transmit TBE along with the other coinfections of lyme, etc. Poland is close to Russia, maybe look for a virus too.
Posted by B R H (Member # 12159) on :
Not true. You should actually take the time to try to understand MP before posting completely false information.
The vitamin D test results are NOT used to predict the outcome of treatment on MP. When the ratio of 1,25-D to 25-D is unusually high, as is the case with this patient (despite supplementation!), the process is obviously dysregulated. That's it. What do you think is the explanation for test results like this?
Also, the patient's response to vitamin D supplementation is a mirror image of so many reports on the MP boards.
Posted by tickbattler (Member # 14873) on :
My husband recently tested positive for bart after several negative tests. He is currently taking levaquin with no side effects so far (he has taken 1.5 months) and it seems to be helping his brain fog and the insomnia is slowly improving.
He still has headaches which we are not sure whether they are from bart or babs. He tested positive with a low titer a couple of times for babs.
tickbattler
Posted by DoctorLuddite (Member # 13853) on :
What kind of vitamin D are you taking, and how much?
Not all supplemental vitamin D is created equal.
When D is chronically low, we do not absorb calcium, and the production of parathyroid hormone is upregulated in order to mobilize calcium stores from bone, which drives the kidneys into producing 1 alpha hydroxylase, which in turn converts most available 25 hydroxy into 1,25 dihydroxy, and too much of that can have negative consequences. The trick is to bring 25 hydroxy up AND lower 1,25 dihydroxy simultaneously.
This also would explain bone pain, as the demineralized osteoid absorbs water which causes the periosteum, the part of the bone with the greatest # of pain nerves.
Having your parathyroid hormone and calcium levels tested could shed some light on whether this is simply Vit D deficiency vs an altered vit. D cycle and that could guide you in chosing between simple D supplementation vs MP.
This testing should be coordinated by a physician who understands the subtleties of vit D metabolism.
Benicar is an ACE inhibitor and these meds lower kidney perfusion, which could explain why the 1,25 dihydro-D level comes down.
Posted by daise (Member # 13622) on :
Hi there nataszkam,
I know what it is to do research, trying to diagnose yourself. I felt alone and ignored as my life fell away. Then I had my EUREKA! moment. I had had a bulls-eye rash. My signs and symptoms fit.
I've been reading the thread and taking notes.
You are positive for Lyme, by testing, and also positive for erhlichia. Those diseases don't just go away.
Were you ever properly treated for erhlichia? That is also a serious disease and some have died from it, without proper treatment.
You've had Lyme treatment for 8-10 months, however, you've had Lyme for years and that length of time is never enough.
I'm glad you got bicillin. Was that LA Bicillin shots in the butt? That's wonderful medicine! It is one of the meds that crosses the blood / brain barrier well.
How long did you have these shots and in what amount, and how many times a week?
IV Rocephen is very good at crossing the blood/brain barrier, as well.
I had 6 months of IV Rocephen and ten months of LA Bicillin shots, 1.2 mil, 3 times a week. I am grateful for this and it helped my head a lot.
The price for Rocephen has come down A LOT! It has gone generic. See the top of the forum for medical, a red-flagged post, for more information. It must be kept refrigerated. It requires a cathetar and weekly dressing changes.
You must be careful to prevent and look for infection. I had a home health care nurse come once a week. She changed my dressing and sometimes drew blood for testing, through the cathetar.
What other drugs for Lyme were you taking?
Cerebral ischemic? Does that mean you were diagnosed with a stroke? If so, I'm so sorry. I've understand that Lyme can cause that.
However ... I'll tell you of my experience. I was misdiagnosed with a stroke. Several neurologists at the VA (military veterans healthcare) who were looking at two MRI's, misdiagnosed (actually lied) and said they showed a stroke. A neurologist outside the VA said the two VA MRI's in fact did not show a stroke. NO EVIDENCE! Plus, I hurt in my head, joints and muscles. Ischemic strokes don't hurt!
A little later I self-diagnosed myself having had Bell's palsy, instead. That's when (usually) half your face (sometimes all of it) is paralyzed. There are varying degrees. My eye and lip hung down. Eye puffy. Vision blurry. Speech was blubbery and slurred.
4 months later Bell's palsy signs left, but not before leaving me with hearing that wavered. A year later I got my hearing back.
Some Lyme-literate MD's consider Bell's palsy to be diagnostic for Lyme.
By the signs and symptoms you mentioned, we chronic Lyme patients see ourselves. Did your signs and symptoms return when you stopped Lyme treatment? Even through coinfection treatment, Lyme treatment can be on-going. Treatment takes time, so please hang-in there. It takes time, it really does.
Could be bart--it is bart! You just tested positive! There's nothing like knowing what you have. It brings suffering down to Earth. OK!
There are a number of drugs and combinations for bart. There are different strains in Europe. It's complicated. Search this site. Research drug effects and combinations. Consider it all with your doctor ... and take your best shot.
Because you are cold all the time I'd definitely tell your doctor. I strongly suggest testing for hypothyroidism. In the general population, hypothyroidism is common and it is epidemic. Lyme can attack the thyroid.
You have one of the MAIN SIGNS. Does your doctor know you feel cold all the time? UNTREATED hypothyroidism will probably mean you will not get much better and may get worse.
ENOUGH thyroid hormone, taken religiously and properly, is needed to fight any infection. Thyroid hormone (T4 and T3) is used by every cell in your body from the tip of your head, clear down to your big, right toe!
May I suggest a bioidentical T4 medication and also a T3 medication--compounded for time-release? (So that T3, which is used right away by your body and brain, can be released slowly-- or you may get signs and symptoms of HYPERthyroidism, which is too much thyroid hormone.)
I know of someone who got compounding done in Poland.
Cobweb veins. Yes. Some here have that, including me, on the top of my hands. I'm not positive what causes that, but ... hmmm ... bart? Perhaps? It's vascular inflammation. Could be some other infection.
Vitamin D and Lyme: Tricky. Not enough is known, yet and research is still minimal.
I'm glad to hear of tick-borne disease work in Poland! How wonderful!
Check for viruses, yes. Which ones? Your doc would know best, for Poland.
I've never had night sweats of babs, yet I start babs treatment soon. I tested negative, by western blot, for Lyme, bart and babs. I have all three, by clinical diagnosis.
I'm glad to hear your doctor is hanging-in there with you and is willing to learn about tick-borne diseases! That's a great thing for the people of Poland!
Please come back and let us know how you are doing.
You must feel miserable. Oh these awful diseases! It's frustrating and takes a lot of time, it just does.
It contains a bart thread. You'll also find European friends there who could give you more accurate information, as far as drugs and combinations for Lyme and bart, considering there are different strains in Europe.
daise Posted by daise (Member # 13622) on :
Up
Posted by B R H (Member # 12159) on :
quote:Originally posted by DoctorLuddite: Benicar is an ACE inhibitor and these meds lower kidney perfusion, which could explain why the 1,25 dihydro-D level comes down.
Benicar is NOT an ACE inhibitor! In fact, Benicar has proven reno-protective effects. If you're going to kill lots of bacteria, Benicar may actually help protect the kidneys during the process!
Posted by Cold Feet (Member # 9882) on :
Ditto on the Benicar correction! I am concerned about a doctor providing incorrect information on this issue -- is anyone else?
Posted by lou (Member # 81) on :
I am concerned that the MP is being pushed for everyone when it doesn't work for everyone. Some people have ended up in the ER with organ failure and others had to stop because of bone problems, since D and sunlight are proscribed in the MP.
It does not work well for finding accurate information when disciples of one cure or another insist on their way or the highway. There may be some good things for some people on MP, but that needs to be documented carefully, and bad effects from MP also need to be recorded.
And I didn't hear the person who started this thread asking for advice on MP. He has low levels of the seasonally variable type of D, and is supplementing. How that figures in with the positive bartonella diagnosis is unknown. Seems like his next biggest problem is treating bart, which is not in the MP.
Posted by Lymen (Member # 6882) on :
There is something funny about vitamin D. If anybody mentions it on any occasions, there are immediately MP supporters who try to promote this highly questionable method of treatment of Marshall.
Vitamin D and similar metabolites in Lyme disease can fluctuate but it is hard make sense out of it. Future research perhaps will explain what is going on.
Posted by kelmo (Member # 8797) on :
I have to say, I'm with you, I'm totally against the Marshall protocol.
My doctor has discovered that 100% of his chronic patients (carrying lyme and co) test in the 7-9 level on vit D. Normal is 37-39.
HOWEVER, they are finding that if they can slowly raise a person's D to above 100, they get a terrific reduction in symptoms.
I'm waiting for my D level to be reported back to me. But, I can tell you from my daughter's experience, that if you are low, you will herx on as low as 400IUs...she has worked up to 6000 daily.
I just started at 4000IUs beause I work outside an hour a day, and I didn't think I would be low. But, I'm a bit uncomfortable. I also have bartonella. I am not on antibiotics at the moment, we are going to use the D as a natural antibiotic, which it is.
My doctor also said he had a patient who dove right in and took 50,000IUs and he lost his hearing due to inflammatory herx. After he stopped the D, it came back. HE worked up slowly and is doing very well (I know this person, and he is)
Those who follow the MP are probably not taking into consideration that their bodies will flare, so they think it's a bad thing.
Every person in our support group tried the MP, and all had dismal results.
DISCLAIMER: WE ARE NOT DOCTORS!! Take this information, and process what works for you and how it works with your doctor.
Take care Kelmo
Posted by lou (Member # 81) on :
Thank you, kelmo, that was very useful information to me. I have been wondering if the doc will start me on a d supplement, even tho summer is coming on and presumably I will be getting more d from sunlight now.
Posted by DoctorLuddite (Member # 13853) on :
The manufacturer of Benicar labels it as an ARB, which means Angiotensin Receptor Blocker. The first generation of these types of antihypertensive meds were the ACE inhibitors, and ACE stands for Angiotensin Converting Enzyme. So what I said in an earlier post wasn't precise, but it wasn't incorrect, because in both cases (ARB and ACE inhibition) you are blocking the effect of angiotensin, the former by preventing it from activating the receptor, the latter by limiting its production, and reducing the pool available to bind to the receptor.
Posted by Cold Feet (Member # 9882) on :
I see that this topic was edited by the moderator, which is a good thing.
One question for Kelmo: can you provide some insights or references as to how vitamin D is an ``antibiotic?''
Some context here...I recently reviewed some presentations about D playing an immuno-suppressive role within spinal discs (spine research is my thing).
Posted by B R H (Member # 12159) on :
quote:Originally posted by DoctorLuddite: The manufacturer of Benicar labels it as an ARB, which means Angiotensin Receptor Blocker. The first generation of these types of antihypertensive meds were the ACE inhibitors, and ACE stands for Angiotensin Converting Enzyme. So what I said in an earlier post wasn't precise, but it wasn't incorrect, because in both cases (ARB and ACE inhibition) you are blocking the effect of angiotensin, the former by preventing it from activating the receptor, the latter by limiting its production, and reducing the pool available to bind to the receptor.
In any event, I'm not sure your points were clear to most following this thread.
My point is that ARB is not equal to ACE is not equal to bad & it seems you don't disagree that Benicar could actually be beneficial.
All the studies I've read indicate Benicar has no effect on or actually increases GFR. Can you offer any proof to the contrary?
[ 04. April 2008, 12:41 PM: Message edited by: B R H ]
Posted by B R H (Member # 12159) on :
quote:Originally posted by kelmo: I have to say, I'm with you, I'm totally against the Marshall protocol.
My doctor has discovered that 100% of his chronic patients (carrying lyme and co) test in the 7-9 level on vit D. Normal is 37-39.
HOWEVER, they are finding that if they can slowly raise a person's D to above 100, they get a terrific reduction in symptoms.
I'm waiting for my D level to be reported back to me. But, I can tell you from my daughter's experience, that if you are low, you will herx on as low as 400IUs...she has worked up to 6000 daily.
I just started at 4000IUs beause I work outside an hour a day, and I didn't think I would be low. But, I'm a bit uncomfortable. I also have bartonella. I am not on antibiotics at the moment, we are going to use the D as a natural antibiotic, which it is.
My doctor also said he had a patient who dove right in and took 50,000IUs and he lost his hearing due to inflammatory herx. After he stopped the D, it came back. HE worked up slowly and is doing very well (I know this person, and he is)
Those who follow the MP are probably not taking into consideration that their bodies will flare, so they think it's a bad thing.
Every person in our support group tried the MP, and all had dismal results.
DISCLAIMER: WE ARE NOT DOCTORS!! Take this information, and process what works for you and how it works with your doctor.
Take care Kelmo
On the other hand, perhaps you & the members of your support group that tried MP are also "not taking into consideration that their bodies will flare, so they think it's a bad thing."
Posted by B R H (Member # 12159) on :
quote:Originally posted by lou: I am concerned that the MP is being pushed for everyone when it doesn't work for everyone. Some people have ended up in the ER with organ failure and others had to stop because of bone problems, since D and sunlight are proscribed in the MP.
It does not work well for finding accurate information when disciples of one cure or another insist on their way or the highway. There may be some good things for some people on MP, but that needs to be documented carefully, and bad effects from MP also need to be recorded.
And I didn't hear the person who started this thread asking for advice on MP. He has low levels of the seasonally variable type of D, and is supplementing. How that figures in with the positive bartonella diagnosis is unknown. Seems like his next biggest problem is treating bart, which is not in the MP.
Please share these examples of "organ failure" & "bone problems" on MP. I'm sure the FDA would take any organ failure claims quite seriously.
So you think our vital organs are immune from these infections?
As with any treatment for any serious illness, the risks must be weighed against the benefits.
Posted by B R H (Member # 12159) on :
quote:Originally posted by Cold Feet: I see that this topic was edited by the moderator, which is a good thing.
I believe a comment by daise about MP "marketing" was removed. Apparently someone (moderator or poster?) realized the error in that statement & removed it. Marshall does not charge anyone a single dime.
Posted by DoctorLuddite (Member # 13853) on :
Can you cite some studies that 1:demonstrate increases in GFR with ARBs in general or Benicar in particular and 2:weren't produced by Marshall himself?
Posted by kelmo (Member # 8797) on :
quote: On the other hand, perhaps you & the members of your support group that tried MP are also "not taking into consideration that their bodies will flare, so they think it's a bad thing."
No. They failed because after a year of the Marshall Protocol they didn't improve in the slightest. When they started antibiotics, they all made steady improvement.
Posted by B R H (Member # 12159) on :
quote:Originally posted by kelmo: No. They failed because after a year of the Marshall Protocol they didn't improve in the slightest. When they started antibiotics, they all made steady improvement.
How do you know their improvement wasn't the result of their treatment on MP?
Posted by B R H (Member # 12159) on :
quote:Originally posted by DoctorLuddite: Can you cite some studies that 1:demonstrate increases in GFR with ARBs in general or Benicar in particular and 2:weren't produced by Marshall himself?
Also, from a telmisartan data sheet: "In 30 hypertensive patients with normal renal function treated for 8 weeks with telmisartan 80 mg or telmisartan 80 mg in combination with hydrochlorothiazide 12.5 mg, there were no clinically significant changes from baseline in renal blood flow, glomerular filtration rate, filtration fraction, renovascular resistance, or creatinine clearance."
There are more (& better) but I simply don't have time to dig them up right now. Being a doctor, I can only assume you have better access to this type of information than I do.
Do some research & you'll find that ARBs do not seem to impair GFR autoregulation as can be the case with ACE inhibitors. Increases in BUN or creatinine while on MP are more likely due to immunopathology/herxheimer.
Now just admit it, there just may be some benefit in using Benicar! Posted by DoctorLuddite (Member # 13853) on :
The link didn't go to an abstract or paper, and the Telmisartan data showed no change in GFR, not an increase. Telmisartan is not Benicar. I am not entirely Anti-MP, but knowing what I know about vitamin D, I don't believe it (MP) should be tried on anyone with Lyme or Post Lyme Syndrome without very carefully thinking through the entire history of their case, their previous medical history, and their condition at the start of treatment, and pertinent diagnostic studies. No detail should be overlooked.
To answer a question from an earlier post, white blood cells produce cathelicidin, a natural antibiotic, but they do it much better when vitamin D is present in sufficient quantities.
Posted by B R H (Member # 12159) on :
quote:Originally posted by DoctorLuddite: The link didn't go to an abstract or paper, and the Telmisartan data showed no change in GFR, not an increase. Telmisartan is not Benicar. I am not entirely Anti-MP, but knowing what I know about vitamin D, I don't believe it (MP) should be tried on anyone with Lyme or Post Lyme Syndrome without very carefully thinking through the entire history of their case, their previous medical history, and their condition at the start of treatment, and pertinent diagnostic studies. No detail should be overlooked.
To answer a question from an earlier post, white blood cells produce cathelicidin, a natural antibiotic, but they do it much better when vitamin D is present in sufficient quantities.
I agree that doctors should give more attention to details before initiating ANY treatment, including vitamin D supplementation!
Posted by DoctorLuddite (Member # 13853) on :
That showed an increased gfr after a complete ischemic insult, not the condition most people who go on MP or ARBs are experiencing...A study that would really support the use of Benicar in the situation of high 1,25 dihydroxy D would show an immediate decline in 1 alpha hydroxylase activity, that is the enzyme in the kidney that converts calcidiol into triol...
Add to that caution in your last post the use of antibiotics.
Posted by lou (Member # 81) on :
Dr. L, would you care to express an opinion on whether benicar could be used to moderate a herxheimer reaction? Especially in situations where the herx can cause major damage. This has been suggested to me, but I have not seen it used in my particular manifestation of lyme, and am not convinced I want to be the guinea pig.
Not looking for you to advise on treatment for me, just whether benicar is immune modulating in that sense. In other words, a drug question, not a patient treatment question.
Posted by DoctorLuddite (Member # 13853) on :
Your concern is well founded, but I rarely prescribe meds of any type, instead focusing on the removal of toxic substances from patients' environments and diets, and the replacement of nutrients and cofactors that should be present but are not.
I have never actually prescribed benicar for anything.
I have no doubt that it functions the way that its manufacturer claims, but it is what they don't claim that one must be wary of...Certainly it was tried on many people before it ever hit the market, and therefore does not carry a high degree of risk, unlike some pulled meds, ie: Vioxx, Duract, Rezulin, the first of these linked to MIs, the latter two, liver failure. But like any med, its use incurs risk.
Someone should do a study to see if herxes happen more or less frequently in people who have a high 1,25 di-OH D to 25 OH-D ratio.
Posted by Cold Feet (Member # 9882) on :
Curr Med Res Opin. 2008 Mar 25
Angiotensin receptor blockers: RAAS blockade and renoprotection. Ruilope LM.
INTRODUCTION: Chronic kidney disease (CKD) is an increasingly prevalent public health concern and is associated with a high risk of adverse cardiovascular outcomes. Renal impairment is frequently associated with hypertension and there is compelling evidence of the benefits of antihypertensive therapy for reducing progression of kidney disease. The central role of the reninangiotensin-aldosterone system (RAAS) in hypertension and renal disease has led to interest in the ability of RAAS-blocking agents to provide benefits beyond blood pressure control.
SCOPE: This review explores the mechanisms involved in CKD development, assesses markers of CKD progression, explores the role of the RAAS in renal disease, and examines RAAS blockade as a therapeutic option for renoprotection. For this purpose, a non-systematic literature review was conducted using the Medline database.
FINDINGS: Studies in patients with diabetic renal disease have shown that RAAS blockade with angiotensin converting enzyme (ACE)-inhibitors or angiotensin receptor blockers (ARBs) reduces progression of renal disease. Similarly, several studies have demonstrated the benefits of ACE inhibitors in non-diabetic renal disease, although few studies have been conducted with ARBs in this setting. At present, there is little evidence to determine the relative merits of ARBs and ACE inhibitors in terms of clinical outcomes, although ARBs appear to have advantages in terms of renal haemodynamics and measures of renal function.
CONCLUSIONS: The beneficial effects of ARBs, which result from a combination of antihypertensive, haemodynamic, antiproteinuric and pleiotropic mechanisms, provide a strong rationale for considering the use of these agents in the treatment of high-risk patients.
Vasc Health Risk Manag. 2006 December; 2(4): 327-340. Published online 2006 December. PMCID: PMC1994016 Copyright � 2006 Dove Medical Press Limited. All rights reserved Olmesartan medoxomil: current status of its use in monotherapy Hans R Brunner Lausanne University, Lausanne and Medizinische Poliklik, Universitaetsspital, Basel, Switzerland Correspondence: Hans R Brunner Bahnhofstrasse 50, 4125 Riehen, Switzerland Tel +41 61 641 25 10 Fax +41 61 641 25 10 Email [email protected]
Abstract Olmesartan medoxomil is an angiotensin II receptor antagonist. In pooled analyses of seven randomized, double-blind trials, 8 weeks' treatment with olmesartan medoxomil was significantly more effective than placebo in terms of the response rate, proportion of patients achieving target blood pressure (BP) and mean change from baseline in diastolic (DBP) and systolic blood pressure (SBP).
Olmesartan medoxomil had a fast onset of action, with significant between-group differences evident from 2 weeks onwards. The drug was well tolerated with a similar adverse event profile to placebo. In patients with type 2 diabetes, olmesartan medoxomil reduced renal vascular resistance, increased renal perfusion, and reduced oxidative stress. In several large, randomized, double-blind trials, olmesartan medoxomil 20 mg has been shown to be significantly more effective, in terms of primary endpoints, than recommended doses of losartan, valsartan, irbesartan, or candesartan cilexetil, and to provide better 24 h BP protection. Olmesartan medoxomil was at least as effective as amlodipine, felodipine and atenolol, and significantly more effective than captopril.
The efficacy of olmesartan medoxomil in reducing cardiovascular risk beyond BP reduction is currently being investigated in trials involving patients at high risk due to atherosclerosis or type 2 diabetes.
Posted by kelmo (Member # 8797) on :
quote: How do you know their improvement wasn't the result of their treatment on MP?
I'm not going to get into your circle of arguments. I can tell you that after a year in the dark rooms, and the skin shielding clothing, they were no better off.
Actually, two people came from the MP and did the Diflucan/penicillin protocol and made the most advance.
Now, they are supplementing with D.
I just found out that my vitamin D level is 31. I have been a crossing guard in the sunniest state in the union for the past 10 years. I consume milk and yogurt and vitamin fortified cereals. How could I possibly have a low vitamin D level?
Perhaps this disease causes a malabsorption problem.
Here is just one article touting the benefits of Vitamin D as a natural antibiotic. You could've easily googled it, as I did.
Look, you do the Marshall if you feel you have to. It's not my place to tell you to stop. Conversely, it's not right for you to come here and force this protocol on us. What gives you the authority to say this is the a viable way to get well? What can you possibly gain from this?
Do you work for Trevor Marshall?
This is my last post on this thread. There's no reason to return to it.
Posted by nataszkam (Member # 14225) on :
Marshall Protocol ? No, thanks
Hi all, Apologies for keeping you waiting for news from me.
I took vitamin D3 (colecalciferolum) for about 8 weeks altogether; 1-2 drops a day. I had another tests done after a six-week break and I have just received the results: 25(OH) 21 (norm 11-54). I haven't had 1,25 (OH) done. My general feeling has not changed at all. I will probably have tests 1,25 and 25 (OH) done again in 2 months.
I have also had MRI done recently - it's ok.
I stopped the treatment in the middle of February as there was neither improvement nor herx and I really didn't feel well. My third boreliosis PCR was negative again-there was not a single copy of DNA. After 2 weeks the state of my health started to deteriorate again - headaches, pains in the neck...I wanted to resume the treatment, I was to start taking ceftriaxone however my veins were in such a poor condition that the nurses gave up
I have recently received bartonella PCR result (henselae) and I resume the treatment (baktrim forte,roxy). In summer, there was an improvement of the state of my health thanks to that combination of medicines. If there is no change this time, I can still try erythromycin and, at the very end, gentamycin and fluoroquinolones which I am afraid of.
I have lymphopenia so many viruses could have become active. I haven't checked that since I should start with treating bartonella anyway.
Hair trace analysis (January 2008) revealed I have too much calcium and magnesium which means my organism doesn't assimilate these elements and therefore I have calcium and magnesium deficiency. I have had tests made:
- level of parathyroid hormone (within the norm) - calcium in blood plasma (within the norm, however it was a bit too high last year) - calcium ca++ within the norm - level of homocysteine- (above the norm) - level of B12 vitamin - within the norm - complex examination of thyroid (fT3, fT4, TSH, a-TPO, a-TG, usg)- everything was OK, I was examined many times, both before the diagnosis and during the treatment.
My treatment:
I took Rocephen, azitro and tini in pulses for 5 weeks, if there was any improvement, it wasn't significant. Next:
*Biccilin (2 400 000) +biaxin + Tini 9 weeks *Baktrim forte + roxy + Tini 4 *Amoxy + roxy + tini 6 *Tetra + tini 5 *Rif+azitro 6 *Rif+roxy+doxy 4 *Rif+amoxy+doxy+tini 2
I don't know if I have been cured of erlichia. I took doxycyklinum for 23 weeks altogether. In few weeks time I will know the results of PRC tests of erlichia, mycoplasma and bartonella quintana. The Centre in Poznań has been working on the implementation of the tests. PCR of chlamydia trachomatis is negative.
I'd like to mention that my son and mother are also ill
My son is almost 11 and he was bitten by a tick in July 2006 but it was only in December 2006 that I realized he is ill with borreliosis; he had positive PCR and 2 Western Blot tests. He's been undergoing treatment since January 2007. He was recuperating for half a year (no symptoms since August 2007). However I received the result of IFA on bartonella positive in August 2007 and for 5,5 months he was treated from bartonella and borreliosis.
His PCR of Bb: * October 2007 - positive (2-3 copies) * December 2007 - negative * February 2008 - positive.
In December the doctor decided to end borreliosis treatment (no symptoms), my son still took rifampin as we were waiting for the results of PCR of bartonella. Since January, my son again had the symptoms (weakness, headaches, pain in the bones), however they were treated as the symptoms of possible candid (the state of my health was very poor then so I wasn't aware of the fact that my son's symptoms were still caused by borreliosis)
After receiving positive results of PCR of borreliosis test, the treatment was resumed- cetriaxone for 6 weeks, together with azitro 500 interchangeably with tini (2 x 500). There has been significant improvement. Now my son begins oral treatment; instead of ceftriaxone he will be taking azitro and tini.We have just received positive PCR of bartonella and Chlamydia trachomatis Our doctor is not quite sure, how to proceed with regard to my son's treatment. Baktrim resulted in allergic reaction.
My mum has been ill for several years. Boreliosis has not been proved with the medical tests, my mum was treated with doxy, roxy and tini for several weeks, with no significant improvement, but with herxes. She has recently received positive PCR of bartonella.
I know Lymeneteurope however it does not contain much experience regarding bartonella.
My new doctor has just been getting to know tick-borne diseases. It was only last year that he decided to take care of several patients suffering from these diseases. He has got little experience however he is very willing to learn and to discuss the issues related to borreliosis. He knows English so he often makes use of the publications I provide him with. Nevertheless, his experience is scarce...
Hm... Baktrim forte and roxy are good for me- I have better days:)
Best regards
Posted by METALLlC BLUE (Member # 6628) on :
You're most effective treatment was aimed at Lyme Disease and Bartonella. Bactrim, Roxythromycin, and Tinizole?
You could use Bactrim, Biaxen, and Tinizole as well, or Flagyl.
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However, my test was performed by other person and it includes other subsets. I was rather concerned with the estimation of lymphocytes B, T and NK. The person responsible for the test tried to perform CD 57 test in accordance with Stricker's publication and that is why he estimated subset CD57+CD3- (my result is 33). And here, in the forum, you write about CD8-/CD57+ as CD 57 test and that's why I don't understand anything ![[dizzy]](graemlins/dizzy.gif)
I'll try to make other laboratory (the laboratory at the clinical hospital for children) get interested in the test. You've got PM from me ![[Smile]](smile.gif)
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In my case, it's been getting more and more acute recently....![[Cool]](cool.gif)
For example, they've introduced quantitative test PCR rt which makes it possible to estimate the number of DNA copies in a given sample (and it can useful during the treatment). And they use genetic probe.![[woohoo]](graemlins/woohoo.gif)