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I am 32 years and two children. I’m from Romania (Europe). I do not speak English well and try to translate with a program. Sorry if you do not write correctly!
Disease began in 2007 after the birth. First with neurological: tingling hands and feet, weakness and multiple cerebral ischemic lesions. After six months rheumatic problems, initially at lower column, then the whole column, ribs, knees and shoulders. I feel like a burn. Pain flare-ups are big and have morning stiffness.
Doctors said he may have ankylosing spondylitis with HLA B 27 positive.
In the first year I took Medrol, salazopirin, and NSAIDs but I felt worse.
I was in Budapest to Dr. “B” which I tested for Lyme but the results were not conclusive. I attached the result of the investigation.
In Romania all out negative !
“The possibility of the Existing Liyme WAS Examined borreliosis with Western-blot method and DualDurHello Nictatiana,
sorry to hear about your problems. I’m just a fellow patient (as most here), so see my ideas as that only. I am not aware of an AP doctor in your area.
That you don’t have elevated inflammation markers means little. When the condition has become chronic, the tests often get normal (It was so for me, elevated CRP for the first year, then returning to normal).
That you did better on Doxycyline is a surely a sign that you possibly have a chronic infection. The respiratory involement can be a suggestion that there is a Chlamydia Pneumoniae infection as well as the Borrelia that it seems that you have.
You didn’t take all the other antibiotics (Ciprobay, Tinidazole etc)? Ciprobay/ciprofloxacin has problems when taken for longer periods. Thrush and other fungal problems are probably better countered from the beginning of antibiotics, or even before, as they seem difficult to get rid of when they are there. Good diet (with natural anti-fungals), probiotics (as you were prescribed?), and if needed medication.
You did try the low starch diet without getting better?
With Borrelia present, the combination of a Macrolide (Roxithromycin, or Azithromycin, Clarithromycin) and the Tinidazole, is a good one (and personally, I suspect that the combination is even better when combined with Doxycycline or Minocycline). Other drugs are needed for Babesia (Clarithromycin and Atovaquone is the preferred combination it seems). Most chronic infections are difficult to diangnose, as they hide inside cells.
If you want to learn about Chlamydia Pneumoniae (Cpn), see cpnhelp.org, there has been someone from Bulgaria participating on the forum there, but I don’t recall having seen people from Romania. There is a czech forum too, and perhaps someone there can give you suggestions for doctors.
The AP used here is not so good for Borrelia/Lyme, Lyme co-infections, or Cpn. Tehy need higher doses (like the one you were prescribed), and also for a long duration (years in the case of Cpn).
Hopefully, someone here knows of doctors from Romania.
Good luck
Greetings from Denver, CO USA. There is another member of RBF, Relu, who is can speak English and maybe able to assist you with communication. His forum name is Relu91, and his name id Relu. I have spoken with him in past. Very nice guy who is using AP and recently travelled from Romania for the treatment. He is living in USA.
Please try and contact him via the forum and see if he can assist with your communi9cation barrier. Very sorry to hear that you are so sick. I am apso sick with a 20 month old baby, but am confident that this AP will knock out my condition.
@nictatiana wrote:
I am 32 years and two children. I’m from Romania (Europe). I do not speak English well and try to translate with a program. Sorry if you do not write correctly!
Disease began in 2007 after the birth. First with neurological: tingling hands and feet, weakness and multiple cerebral ischemic lesions. After six months rheumatic problems, initially at lower column, then the whole column, ribs, knees and shoulders. I feel like a burn. Pain flare-ups are big and have morning stiffness.
Doctors said he may have ankylosing spondylitis with HLA B 27 positive.
In the first year I took Medrol, salazopirin, and NSAIDs but I felt worse.
I was in Budapest to Dr. “B” which I tested for Lyme but the results were not conclusive. I attached the result of the investigation.
In Romania all out negative !
“The possibility of the Existing Liyme WAS Examined borreliosis with Western-blot method and DualDurThere was a mistake below. His ID is relu911. Good luck.
@nictatiana wrote:
I am 32 years and two children. I’m from Romania (Europe). I do not speak English well and try to translate with a program. Sorry if you do not write correctly!
Disease began in 2007 after the birth. First with neurological: tingling hands and feet, weakness and multiple cerebral ischemic lesions. After six months rheumatic problems, initially at lower column, then the whole column, ribs, knees and shoulders. I feel like a burn. Pain flare-ups are big and have morning stiffness.
Doctors said he may have ankylosing spondylitis with HLA B 27 positive.
In the first year I took Medrol, salazopirin, and NSAIDs but I felt worse.
I was in Budapest to Dr. “B” which I tested for Lyme but the results were not conclusive. I attached the result of the investigation.
In Romania all out negative !
“The possibility of the Existing Liyme WAS Examined borreliosis with Western-blot method and DualDurI meant he can speak both English, but is from Romania.
ote=”nictatiana”]I am 32 years and two children. I’m from Romania (Europe). I do not speak English well and try to translate with a program. Sorry if you do not write correctly!
Disease began in 2007 after the birth. First with neurological: tingling hands and feet, weakness and multiple cerebral ischemic lesions. After six months rheumatic problems, initially at lower column, then the whole column, ribs, knees and shoulders. I feel like a burn. Pain flare-ups are big and have morning stiffness.
Doctors said he may have ankylosing spondylitis with HLA B 27 positive.
In the first year I took Medrol, salazopirin, and NSAIDs but I felt worse.
I was in Budapest to Dr. “B” which I tested for Lyme but the results were not conclusive. I attached the result of the investigation.
In Romania all out negative !
“The possibility of the Existing Liyme WAS Examined borreliosis with Western-blot method and DualDurI took all full regimen for 6 weeks, just as I took Doxycycline, Minocycline is not.
I did not come out positive or Lyme Coinfections (in Romania) is just a supposition. Here doctors say I autoimmune disease and that.
I tried to talk to each other from Romania, but still I am not allowed to send private messages that are new. I do not know what else. This is “Relu911”@nictatiana wrote:
I took all full regimen for 6 weeks, just as I took Doxycycline, Minocycline is not.
I did not come out positive or Lyme Coinfections (in Romania) is just a supposition. Here doctors say I autoimmune disease and that.
I tried to talk to each other from Romania, but still I am not allowed to send private messages that are new. I do not know what else. This is “Relu911”The Private Message system has changed under the new Forum Software. when you click on submit the PM will stay in your outbox until the reciptient picks it up, then will leave your box, where it isstored till then. Relu: How are you doing?
What is your current regimen after returning from seeing Dr. S in Ida Grove?
On many forums, new users are not allowed to send PMs. It’s an anti-spam measure designed to thwart spammers from signing up and blasting all the other members with spam messages. Perhaps an admin or moderator can remove the restriction and allow her to send personal messages.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein@PhilC wrote:
On many forums, new users are not allowed to send PMs. It’s an anti-spam measure designed to thwart spammers from signing up and blasting all the other members with spam messages. Perhaps an admin or moderator can remove the restriction and allow her to send personal messages.
Phil
Welcome Nictatiana! Approval now granted. New Member’s posts require certain approvals to help stop SPAM from getting through. Nicotania, if you are still having problems sending Private Messages: click on User Control Panel (above left). Thern click on Board Preferences. Then check the box that allows others to send you Private Messages. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)For MINOCINMAN: I noticed that Nictatiana’s post was quoted in full in each of your answers. This new Board does take a little getting used to 😀 -so just wanted to mention that you dont have to quote a post unless you want to – and you can always delete parts of it in your response. If you dont want to quote it at all and just reply, just click on ‘post reply’ at bottom left. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thank you very much. This is good because will take up less server space and will allow faster response time between pages. I would suggest that you Broadcast to all members with a new ost and includee this in new members instructions post.
@MINOCINMAN wrote:
This is good because will take up less server space and will allow faster response time between pages. I would suggest that you Broadcast to all members with a new ost and includee this in new members instructions post.
Hi MinocinMan,
I think posters, in general, already do this. The important thing in replying to a post is to just use the user ID of the person to whom you are replying in your salutation (e.g. Hi MinocinMan), because otherwise visitors may not know for whom a reply is intended, otherwise.
If you prefer not to use a poster’s name in a reply, then a quote from their post will do, just deleting out the text of their message that doesn’t apply to your reply before submitting. The difficulty otherwise is knowing to whom a post is directed. There can be many replies on a particular discussion thread, so unless a post is intended as a general information one, people don’t know for whom a reply is meant unless a user ID is specfied in the reply or a quoted segment of their prior post.
Hello, Nictatiana:
Go to the KickAS Forums and look for user “Alinus;” from Romania (Suceava?) because certainly You have AS (history of pelvic inflammatory condition plus IBS and age of onset, etc). Many people with AS do not have inflammatory markers even when disease is fully active.
I strongly suggest that You continue with VLowStarchDiet because it takes some time to learn it and more time for it to “work” which is a subjective thing–that is we often cannot tell how much good something is doing due to the variations of disease and our perceptions–even people on London AS Diet for nine months could not tell a difference, but their inflammatory markers came down considerably, but up to 40% of us do not show anything in CRP or ESR readings.
The combination of dietary starch control with antibiotics will eventually control symptoms and totally stop the progression of damage, but it can take over two months before You “feel” much better. But start with The Edgar Cayce Three Day Apple Diet for cleansing and to provide a ‘leg up’ on Your condition. I fasted for 20 days once and got myself into very long-term remission; sometimes this is what it takes.
But once You have been strict with diet (see NSD Forum at KickAS) for several weeks, and then begin a good antibiotic, it will be very very clear to You within FOUR DAYS that You are absolutely on the right regimen.
HEALTH,
John
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