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Hi everyone,
just thought I would let you know how my Son is doing One Month after starting Doxy.
He almost certainly herxed at the two week period with muscle pains,sore throat and headches. He also had a strange tingling,burning pain in his hands but there was nothing to see. His herx has now setlled right down and he is increasing his Doxy to 100mg M,W and F.
Of course one month in nothing much has changed except we are fulll of hope.
I think I will keep updating monthly and recall all symptoms and changes in him as it may well be helpful to someone else now or in the future.
Until next month I send you all my best wishes for a happier and healthier journey on your recoveries.
Caroline.
Caroline,
Thank you so much for sharing the progress of your son. For all the years I've been following and on AP, this has been the case even for (especially for) children. Even the JRA patients with serious eye involvement who were lucky enough to see Dr. Emil Wirostko at his NY or NJ offices were treated in this way. Dr. EW was an outstanding scientist and ophthalmologist, whom I had the good fortune of seeing back about 2000, while still being treated by our wonderful AP physician in Iowa.
I encourate you to continue studying and learning all you can about your son's condition and reactions along the way, and about the nutritional help (foods, probiotics, and antioxidant supplements, etc., to protect and rebuild).
And thank you for your commitment to share his/your insights with others. It may not always “take a village,” but it certainly seems the best way I could ever have imagined.
Best,
AF
[user=2147]motherbear[/user] wrote:
I think I will keep updating monthly and recall all symptoms and changes in him as it may well be helpful to someone else now or in the future.
Caroline, that's a terrific idea! If this helps, there is a separate section on the forum for journaling in the Personal Progress Threads here:
http://rbfbb.org/view_forum.php?id=3
No one else can post on these threads and they are strictly for personal use, though registered users of the forum can read other people's journaling. You can start your own journal thread and post updates whenever you want. You can also add the link to your journal thread in your signature line, so every time you post here in the General discussion area, everyone can click on your journal thread to read your news updates (see the link to my personal progress thread in my sig line). Everyone here is welcome to do this, so please feel free to use this function.
Really glad to hear your lovely son is now past the worst of his early herxing. Each time he adjusts his abx, he may experience more herxing, so this is worth knowing if he notices any steps back. The journey can be a bit of a 3 step fwd and 2 step back thing all the way – it has been for me – but the longterm trend is what you want to be looking at. In other words, there will be better days than others, but there should be improvements over time.
Thanks for posting your update! 🙂
Peace, Maz
[user=27]Maz[/user] wrote:
Caroline, that's a terrific idea!
I agree and am so happy that progress is being made.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Hi AF,
thank you so much for your kind words of encouragement and your insight into AP.
I really believe that knowledge is power and from the moment I found my son had this disease , armed myself with all the information I could. It is a battle including with my son at times but the fight will go on .
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Maz,
I will start a personal thread because I know it is so important. I have found it hard to gleen varied information for AS from this site just because it isn't a very common disease or not enough AS sufferers have found their way here. I need to feel that if any other mother comes to this site or an adult that they can read my thread as well as John's and gain some comfort.
One thing I didn't mention Maz , I feel his mental state has improved because he herxed! The fact that he did made him think, “Maybe this will work”. It is soo good to see!:D Thanks Maz for all your advise , your a star! Caroline
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Trudi,
Of course I will update you by Pm in more detail. Take care. Caroline:)
[user=2147]motherbear[/user] wrote:
……One thing I didn't mention Maz , I feel his mental state has improved because he herxed!….. Caroline
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Caroline,
In the above sentence in your reply about his herxing, recent research I found and read about effects (especially in babies and children) of various substances in their bodies causing all sorts of problems came to mind.
I've located an interview with one of the doctors I most admire. She even testified before Congress a number of years ago, maintaining that in her practice the children she sees, once they are detoxed, have much improvement.
Contact with her several years ago to see if she treats with AP in her area led to further appreciation. She actually shared contacts about AP with a local man who was seeking help for his very ill sister in another country. It appears so much is similar in helping/reversing immune disorders, even if a different “tag” is hung around each of our necks. I believe this link — plus others I will come back and post here later — will be encouraging. [Also, there is a lab that is dedicated to making all kinds of supplements for treating sensitive children and adults with these medical problems, and they are made to ensure patients will willingly take them. Treating physicians persuaded the lab to make these type products.] AF
Balancing Biochemistry: An Interview with [a treating physician]
by Amy Morrison, Issue 115, November/December 2002
This interview was conducted on August 18, 2002, by Amy Morrison, Mothering's associate editor. http://www.mothering.com/articles/growing_child/vaccines/biochemistry.htmlEdit.. Additional information added below:
<span style="color: #008080]This is posted for the purpose of education, not a recommendation for a particular decision or action. Having read these links below, it is believed this information is needed by parents and all of us. Who knows how many toxins are stored in our bodies for years before we finally exceed our limit to maintain health. AF [/size”>
http://www.healing-arts.org/children/mercury_in_vaccines_autism_research/thimerosalinvaccinationslink.htm
Testimony before Congress, Dr. Stephanie Cave (many links on this site)
http://healing-arts.org/children/
Specific Disorders information
New & Noteworthy
http://www.healing-arts.org/children/autismandmercurytestimony.htm
Autism and Mercury
http://www.noamalgam.com/vaccinations.html
What your doctor may not tell you about childhood vaccinations… by Stephanie Cave MD with Deborah Mitchell
To order Dr. Stephanie Cave's book:
http://www.noamalgam.com/faxmail.pdf<span style="font-size:1]Some Parents are Homeschooling Their Kids to Avoid Vaccinations[/size%;”>
Why it may be necessary to go to extreme lengths to protect your children from
unnecessary vaccinations. …
Posted By Dr. Mercola | November 11 2008[/size][/color]
Hi AF,
It is so scary to think we may have poisoned our kid's before they are out of nappies! (Diapers)
There is an awful lot here to digest and I will go through it with a fine toothed comb and see if I think this may link to him. Thanks for all the effort you have put into this I really appreciate it. I might just see if he could have his mercury levels taken with his next blood works and any other metal I may suspect as another possibility.
He has just had his blood results back which I will post hopefully today to see if anyone here can decipher them for me in relation to the AP working. It looks promising to me.
Thanks again….. I have a lot of reading to do!:)
Caroline.
[user=2147]motherbear[/user] wrote:
It is so scary to think we may have poisoned our kid's before they are out of nappies! (Diapers)
There is an awful lot here to digest and I will go through it with a fine toothed comb and see if I think this may link to him. Thanks for all the effort you have put into this I really appreciate it. I might just see if he could have his mercury levels taken with his next blood works and any other metal I may suspect as another possibility.
He has just had his blood results back which I will post hopefully today to see if anyone here can decipher them for me in relation to the AP working. It looks promising to me.
Thanks again….. I have a lot of reading to do!:)
Caroline.
Caroline, the purpose of posting this was not to make a “direct” relationship to your son's case, but to demonstrate, especially through Dr. C's testimony to Congress, what she mentions specifically in her live links in the address. I believe she is trying to educate us about the many ways our bodies are being undermined. Children and teenagers ordinarily should have very strong immune systems. However, with so many things negatively affecting their bodies these days, if they are among those who are predisposed/vulnerable to some of these things, it seems these are the ones who end up with diagnoses such as we have.
In Dr. C's information in the links, she mentions specifically about the testing she does and how she uses the results of these tests to address what is wrong….. and she said that after these are addressed, the children usually get better. Have you thought about e-mailing or calling her office to perhaps get a copy of the labs/panels she usually orders for making such assessments? It may be in her writings or book(s) she gives specifics about these.
The reason I had researched this subject and had these links to Dr. C's work already was for a family member who is expecting a baby soon. She wanted my input, and wrote me a month or more ago. I did not recommend anything, except to read and learn. I do not want the responsibility of deciding vaccine issues for her and her husband. However, I would be wanting detailed information from Dr. C since she has years of experience. (And even for problems/diagnoses such as my own, as I read Dr. C's testing comments, I thought those same type tests might be good for us to have. With a physician as knowledgeable as she, I'd then like to know the procedures for detoxing what is there if the tests indicate a need for this.
Hope you can relax and take things one step at a time. AP usually takes a while — for me about the 4th month things really began turning around. However, there were things my doctors nor I ever figured out until I had begun doing downhill after the first 6 to 7 years. The symptoms were all there, but neither my physicians nor I could “read the tea leaves.” Then unexpectedly one day, the simple but elusive answer presented itself. But there is always more to learn about the complex human body.
I believe your son will get better, and that you are a tenacious Mom and will be able to find the answers.
Best,
AFHi A Friend,
thanks for your post and I am sorry it has taken a while to reply.
Two weeks ago my daughter came home from school with a consent form for the HPV(cervical cancer vac)
She kept on bugging me to fill the form in but something inside me said no. I kept putting it of because I was so busy. Eventually it came time to investigate the side effects of the vaccine. On the literature the side effects were noted as sore arm,slight fever, nausea all the usual stuff but I still had a nagging feeling not to give it to her.
I went on the net and discovered that this vacination can cause those predisposed to autoimmune disease to have a severe immune response reaction and as you know the last thing you need to do when you are predisposed is to over load your immune system. These teenage girls were named the walking wounded as there AI diseases were priming to come out in a few years time. The thought just makes my heart drop.So with a great deal of thought and discussion with my husband and daughter we decided not to risk it as we have autoimmune disease on both sides of our family.
This was nothing to do with your info(honest) We had already decided before you and I had our discussions. It is just very odd that your info has backed up a decision already made. I told her that HPV was a result of a virus obtained by not using safe sex methods and that nearer the time she would be thoroughly educated by me. I just felt it wasn't worth the risk as she is at high risk of an autoimmune disease.
Then strangely enough when I was talking to my son about our decision (post talking to you) he said that just before his AS struck he had been given the flu vaccine! SO I will contact the Doc, thank you.
By the way my son is neg for Lyme and is responding so well with AP therapy(Doxy) He has only been on it for a month and already he has had a huge CRP drop from 64 to 33 in just 4 weeks!!! I know at some point he will recover but I have to keep covering all basis incase we start treading water and have no clear idea of which way to go.
Thank you for your all your help!:) I will contact Dr. C and ask for what lab tests are neccesary. Hopefully my GP will do them for us.
Caroline.
P.S I have just treid to find her email address to no avail for the last hour. Have you any ideas? Thanks.
[user=2147]motherbear[/user] wrote:
Thank you for your all your help!:) I will contact Dr. C and ask for what lab tests are neccesary. Hopefully my GP will do them for us.
Caroline.
P.S I have just treid to find her email address to no avail for the last hour. Have you any ideas? Thanks.
[Edit… added after post below: On the page I found the contact information for Dr. C, also listed were the many types of insurance that is accepted!!! I'm grateful for this, for many of the really knowledgeable physicians are so overrun with patients that they no longer accept some insurance. In the case of babies and children, I'm thinking the majority of families of children are the “gainfully employed” and thankfully do have insurance. AF ]
Caroline, I just did a search using her name and city for her office address. It is given and so is her phone number. Will send it to you in a PM. And… bless you and good luck in your efforts to get your child well, and to keep your children as safe as you can… whatever that entails and however you can. I've become paranoid about Big Pharma and its offerings over the past many years, as more and more knowledgeable doctors, scientists, etc. share with us their contrary information.
Also, in my ongoing reading file, I recently re-read the importance of daily fiber in our diet while we are on a protocol such as AP… in order for the fiber to capture and move toxins out of our body daily, as often the patient has run out of minerals for neutralizing these toxins and lack the fiber to move them on out. In the links/material I posted to you, Dr. C mentioned also the importance of the use of certain detox procedures that help her patients recover faster. The fibers in the reading material have other BIG helps besides just the capturing process. One of them in particular also has EFA's (necessary essential fatty acids which we MUST have). I will put my “thinking cap” on and try to paste it in this reply asap.
AF
Hi AF,
Wow your really working hard for me and I really appreciate it!:)
At this time I have him on Fish oil, Probiotics and Zinc. I have been doing some research on Vit D which will be my next quest. Hopefully his Doc will test his levels and then we can start using that in the right quantity.
Your so right about the fibre. If you think about it a high fibre diet helps reduce the poss of bowel cancer. That being so it must be because it is elliminating the toxins from the bowel! I am going to have to think about how I can introduce a higher fibre diet as he has a good amount already. It is all these small things that add up!
Any info is gratefully received and if I think it relates to him then he will be on it!
Many thanks
Caroline
Dear Caroline,
I was just wondering how your son is doing and now I am so happy to read that he is progressing and doing much better!
I thought I would mention that I strongly believe that all of my troubles started with the flu vaccination I received last October, before which time, my only health problem was Hashimoto's. On the day of the vaccination, I had such a severe reaction that my GP said “You can never have another flu shot in your life”. Interestingly, my AP Dr (F) said the same thing when he met with me. I am fascinated by the pubmed article Maz published about the link between vaccines and autoimmunity. I am so thankful that you spared your daughter the HPV vaccine.
Sending warmest wishes for your son's continued progress!
Andrea
Hi Andrea,
thanks so much for your post.
When he came down with AS I was devasted but all the time there was constant little voice in my head singing “When the going gets tough the tough get going!” You know that song.
For the first time I realised I couldn't sit back and let one man ( Rheumy) dictate to my son what his life was going to be like and that was because he could do no more so he good as told him he had to learn to live with it.
I can honestly say that without the help and support from everyone here I wouldn't be in this position as it would have been a very lonely journey for both me and my son. I know everybody says the same thing but never have I felt a lifeline has been thrown until I found RB and it's lovely, lovely members.
Things are starting to change with my son and for that I thank you all. In fact there has been more change that I haven't posted and I will in a minute as a new topic so everybody can hear it. I'm so excited is another song that comes to mind.
Thank you.
Caroline.
Caroline,
This link to a young lady's post (her dx was ankylosing spondylitis) just appeared while doing a search.
I believe you may find it helpful, and hopefully encouraging.
http://www.rheumatic.org/kelly.htm
If you will go to http://www.rheumatic.org and look under the heading on the Home Page, “Medical Histories“, you may find other stories by other patients with AS. I think of the site as a sister/brother site to Road Back Foundation… as some of the same early volunteers have participated in both.
AF
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