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[user=13]Parisa[/user] wrote:
My husband reacted favorably to antiparasitic and malaria type drugs which we believe was probably Babesia.
Hopefulmama, I hope you don't mind me jumping over your post.
Parisa,
You said that my symptoms were a lot alike your husband's. I also react well to malaria type of medicine. I am reading a lot of antiparasitic information. I am glad to see your post about your husband. I am going to see Dr. C in few days (hopefully my fever will be gone by then), I will definitely mention these medicine to him. PM me if you want to discuss this off list.
:JB
Redrock,
There's alot of mention of Lyme disease these days because it is pervasive. Some areas there is a high incidence of ticks and infected ticks. However, not everyone has Lyme disease and that's why it is important to go to a good LLMD, one that will rule Lyme disease out as well as in.
I never seen Dr. S but he too said not to bother about Lyme testing. Very similar to what Dr F said – the results are confusing and often false positive.
I have no classic Lyme symptoms. I just have SD. My GP who agreed to let me try AP and monitors me for that, himself is an infectionist and he said he did not think I had Lyme, but still did burgdorferi tests and to make the matter worse, both came back negative. I would love to know if my SD was caused by a tick/insect bite or not. I read Lyme in very rare cases can be transmitted even by moscitos. I cannot remember ever being bitten by a tick but I have been many times by moscitos with quite dramatic reactions, too.
So I am postponing the Igenex test for the time being. If after 6 months AP shows no results whatsoever, maybe I will start looking at it again. I will however take Dr S's advice on it first. One has to trust somebody or else would be lost. So, similar to you, hopefulmama, I am still confused and hoping to see the straight line sooner than later. At least you are lucky to be able to see an LLMD, where I live there are none at all.
But I am also confused as to why Dr F would not start AP with you, especially being positive for mycos? It really makes no sense!
Hi Aynurr;
According to my doctor Celiac or Celiac syndrome can cause SD and a host of other diseases if you have had it a long time.Most gluten tests are about as good as most Lyme tests.She says that over 70% of her patients with chronic disease have it.I sure do and never had a symptom other than a couple little water blisters on my back that never went away.She recognised it right away as due to Celiac.Okay, found what I was looking for re:hashimoto's and and had the wrong bacteria, it is YERSINIA:
http://thyroid-disorders.suite101.com/article.cfm/can_antibiotics_cure_hashimotos_disease
“Can Antibiotics Cure Hashimoto's Disease? Possible Bacterial Causes of Hashimoto's Thyroidism
Read more at Suite101: Can Antibiotics Cure Hashimoto's Disease?: Possible Bacterial Causes of Hashimoto's Thyroidism http://thyroid-disorders.suite101.com/article.cfm/can_antibiotics_cure_hashimotos_disease#ixzz0vq92nD15Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
[user=2523]hopefulmama[/user] wrote:
If there is some kind of spiritual component to my healing process, the lesson must be about having to learn to trust my own intuition or follow my own gut.
One of my doctors commented that I have a very good gut instinct. I have often balked at a treatment, which later was confirmed would have done me more harm than good. I wholeheartedly encourage you to trust your own instincts and gut!!
Enjoy your vacation–
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?
I was surprised he did not want to treat the mycoplasma. However, after doing some research I learned that mycoplasma pneumoniae (the type I have) is implicated in walking pneumonia and that healthy young people often overcome the infection without antibiotics. Perhaps he wanted to wait and see what my own immune system is capable of doing. He did listen to my lungs very carefully, as has every doctor I've seen recently, and there is no crackling. I do not have a cough… although I did have one a few months ago. Perhaps my antibodies are elevated because I was sick a little while ago and am now getting better. Also, given my recent trouble with swallowing and esophageal inflammation, he might not have wanted to make it even more difficult for me to eat. (He said the doxy would hurt my esophagus.)
I am feeling much happier today and calmer. There are many ways to skin a cat. My naturopath has already helped me so much. I learned yesterday that one of the supplements he has me taking 3x a day — Moducare — is an extract from maritime pine bark, and has been researched extensively and found to have all kinds of anti-inflammatory, pro-circulation healing properties. Maritime pine has been a key aid in controlling lyme without abx. That, plus the pharmaceutical grade vitamins I am taking, plus digestive enzymes, plus diet, plus transfer factors (e.g. Lymplus is a good one he says) are all a really good start in treating both mycoplasma and lyme.
I was reading about alternate therapies for lyme last night and found that there are several really successful ones — in fact, Andrew Weil recommends chinese herbs above antibiotics for lyme. Dr. Z in NY and Dr. K in Seattle both have extensive protocols for healing lyme without long term abx, using herbs.
We all have to find our own path, and for now, I am choosing to trust Dr. F's judgment. I have never had a doctor take so much time with me, ask so many questions, or examine me so closely. I believe that he knows what he is doing and that I may simply not have scleroderma. He gave me 90% odds that I do not have it. I appreciate and respect him for using his best judgment and yet choosing to follow my case fairly closely to make sure that if something does develop down the road, he is there and that I will receive the best AP treatment.
I'm not going to let grass grow under my feet though 🙂 and I will be continuing acupuncture, exercise, supplements, maybe even herbs, to stay on track for an excellent healing. And if abx are in my future, I welcome that as well!
I feel lucky to have the friendship and support of the wonderful members of this board and I hope that I can be there for you as you have been there for me. Thank you!
Hopefulmama, I agree that you should follow your gut instincts. It often takes several attempts before we can put symptoms together with the right solution.
If you have problems with your esophagus, that should be your first concern. You have to have good nutrition to get better. Keep on looking for a solution, a piece at a time.
I am glad you are going to keep the appt. with a LLMD because he can give you another opinion. Best wishes to you.
Hi, I'm not sure I'm following. He said you've got mycoplasma but is not prescribing antibiotics for it?
Are you 110% gluten free?
Thanks
Hi m,
Yes you are reading that correctly. Dr. F says I have mycoplasma and he is not going to treat it. At least not right now.
That said, I think a lot of the population is positive for mycoplasma antibodies. Maybe in some people (depending on genetics, general state of health, stress, etc.) it turns into a rheumatic problem and for others it does not.
Anyway, I don't know what his reasoning was. Maybe when I see him in November he will decide to treat the mycoplasma.
Thanks for your warmth and encouragement!
p.s. I was 100% gluten free from 12/07 to 3/10 but was DNA tested and do not have the genes for celiac. I also tested negative on every other kind of test. This does not, of course, mean that I am not gluten sensitive. But, given that I have recently tested strong positive for allergy to soy and rice, gluten is probably going to stay back in my rotation for a little while.
Re: gluten & autoimmune thyroid disease. IMO, it really is a must to ditch the gluten.
Mary Shomon's thyroid site discusses this. There was recently a good podcast discussing this
Jimmy Moore interviewing Datis Kharrazian.
And Chris Kresser at The Healthy Skeptic blog just wrote a short series on autoimmune thyroid disease.HTH
Hi hopefulmama, it's good that you have figured it out for yourself! A way to go! I have similar thoughts to yours re mycoplasmas as well. My m.pneumonae test came back negative. I do understand that the standard tests used by most of the labs may not be able to find mycos and will give false negatives. But Dr. S told me not to even bother with the tests for myco even those used by Dr. Brown as he believes if I have SD, then I have mycoplasmas. So, I am just waiting to see how AP works.
Intersting to hear you are taking Moducare – I have read about it at the very beginning of my quest for SD termination. But I am not sure if one should/could take it while on abx? Or do abx already do the job and Moducare is no more needed? Or will Moducare help abx to do their job better by strengthening immune system so that the mycos weakened by tetras could be killed off? I am inclined towards the latter. None of the docs here are able to answer me, so maybe somebody here can supprort either of my thoughts? I though maybe you as you take Moducare and your naturopath may have explained something to you?
This article by an LLMD might help (actually this whole blog has some good stuff!):
http://lymemd.blogspot.com/2010_03_01_archive.html
from the article:
“I had a recent conversation with a patient. I told her we need to sort out other co-morbidities. Co-infections? No. This was a new term for this very Lyme literate patient. I was not saying the patient did not have Lyme disease. Not at all. Patients with Lyme disease frequently have a variety of other medical problems which contribute to their illness to varying extents. And, in some cases, it is not Lyme which is making the patient ill, regardless of what the Western Blot says: if the signs and symptoms do not fit — Lyme may not be the primary issue. Or, perhaps Lyme's contribution to the illness is minor.”Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
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