posted
Hello All, I have been in treatment for about 2.5-3 years at this point and feel I'm at a bit of a crossroads in my treatment. ( I was ill and diagnosed as fibromyalgia for 7 years prior.) I am wondering if I need to add another doc to my team in order to stop plateuing in my progress.
I am at about 65/70% but, have been higher within the past year and keep wavering from say 60-80%. I have been treating with Dr. H of NY who I credit from bringing me up from about 20% of normal...but I don't seem to be responding quickly to anything from the office lately and am a little frustrated and concerned that perhaps the office does not have all of the modalities needed to bring me to the finish line.
I am considering going to Dr. K of WA but am very nervous due to the high expense. Also, they use quite a few non-conventional approaches I have used in the past and am apprehensive to spend all of this money if these don't work or if the same treatment could be found closer. Does anyone have experience with this Dr?
A large part of my dilemma is the chemical sensitivity I have developed over the past 4 years...which truly caused a large dip in my ability to function... Any thoughts?
Thanks! Posts: 109 | From North East | Registered: Mar 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi,
I can't answer specifics to either of your questions as I am only at 40% still.
But I just wanted to say that if other members have specific feedback on either doc they should PM you, rather than post publically about the docs.
We have to protect our docs, whether we think they are great or horrible, so PM ing you with personal experiences may be better than responding publically
I hope other members will reply soon.
Best wishes
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Greta, I understand where you're coming from> But I totally disagree with you.
She only used the first letter, which is acceptable.
If Lassie27 has some insight on Certain doctors we should all be aware of this.
I hope others agree!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
There's a fine line here. Just be careful of what you say on this very public board.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I love Doc H, and his staff. He's brought me up (like you), and I will take any amount of progress I can get. You've gone up 20%. IMO, that's great. I also think it's great you are looking for more answers. I've always been of the opinion that if I plateau, then I should either keep looking for more answers, and/or switch to someone who I think will help me progress further.
I would lay odds you have more things going on. Have you thought about proto, or parasites or gene mutations? Parasites are a HUGE link, IMO. Dr. K practitioners realize this. If you haven't yet, you can always try any one of the herbal formulas out there (parastroy, humaworm, etc)? Also, THE PARASITE WARRIOR'S THREAD has lots of info on it.
As for proto, IMO it disguises itself better than lyme (because of the overlapping symptoms). Also gene mutations can play an important role in our progress. I'm not sure any doc in NY is allowed to order the complete tests though, but you can order them on line.
There was someone on the board recently who went to Dr. K's clinic and decided it was not for her. I'm sure they have helped many people there though. I have a high degree of respect for Dr. K and the discoveries he has made to help treat his patients. Fortunately for us all, info on them is fairly easy to find (very kind of Dr. K).
I have found that alternative methods have been helpful for me. The good news is, I can do them without leaving my doc. We are all different though. You have to follow your gut.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Why is it no one sees the danger in candida/yeast? It's just as big a threat as parasites and often goes hand in hand with parasites.
Jus' sayin'
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Often they are hand in hand. My experience is been more successful at it treating parasites and then dealing with the yeast fallout when doing that. Dealing with yeast as a primary did help some in the beginning but there were limitations to it, where it has seemed going at parasites got me further.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Seems if you are going to do one, you may as well do both.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Yes, I am doing both, and it is NOT fun.
Never travelled, hate sushi, haven't even owned a pet in my adult life, no farms, clean on the border of OCD
passing passing passing parasites.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
So anyway, I agree, if you haven't gone after parasites and yeast aggressively,
this really does seem to be a big ticket.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Lymetoo: you are right. Along with parasites, yeast is a biggie. I'm struggling with it myself and it is hard to get in check. I assumed that it's a given...but maybe some Drs aren't focusing on it like they should? or maybe patients aren't letting their Drs know that it's a problem.
I know I make it a point to let my LLMD know during each phone appt whether my tongue has a whitish coating, feet flaking and/or other areas of yeast so that he can adjust my meds/supps accordingly.
Lassie: Do the spit test in the AM and see what the result is.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sure, yeast will slow a patient down, even go the other way. Doc H and staff ask their patients about yeast every visit though, so I wouldn't think of yeast as a missing link for Lassie.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
You said that you have MCS, a lot of times that comes from being susceptible to mold. Mold was a huge part of my illness.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Thanks for all of your responses! I def don't want to expose any docs to any issues - so please feel free to pm me with specifics...(I hope I haven't written too much?) Is there anyone that has been to Dr.K that would be able to pm me?
Catgirl - What are proto or gene mutations? I have treated for yeast for a few months and never have a coated white tongue. I have not ever treated for parasites though and have heard how helpful everyone here finds it to be. I know of a test I can take, but it seems too expensive and I'm trying to take a little brake in spending enormous amounts for a little bit. Do you know of any test that is reasonable in cost? Can you just take a humaworm and see what the results are or is that dangerous?
Laxmom - I will def try the spit test to see if I have any lingering issues with candida. I def do eat the high yeast foods listed on your link still.
RC1 - I have done some treatment for mold, but never finished any full course of treatment. Would you be able to pm me to see if there is something I missed. Some doctors I've seen felt this was a big part of my illness. However, I'm not sure if I addressed it correctly to be honest.
Posts: 109 | From North East | Registered: Mar 2011
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The last 20-30% of recovery is the most difficult. I've spent more time on the last 10-20% than all of treatment! It's not easy to find what is causing the remaining symptoms.
I am a big believer in either Zyto (electrodermal screening) or ART. You need to get really in touch with your body and determine what is needed to uncover the remaining layers.
I would get recommendations of alternative practitioners in your area that are skilled at muscle testing or Zyto practitioners.
Posts: 964 | From san diego | Registered: Oct 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by baileypup: Lassie,
The last 20-30% of recovery is the most difficult. I've spent more time on the last 10-20% than all of treatment! It's not easy to find what is causing the remaining symptoms.
Wow, good to know Baileypup! Lymetoo, I didn't know yeast can cause MCS (good to know).
My MCS has gotten better somewhere between treating parasites and removing heavy metals (toxic overload maybe).
Proto is protomyxzoa. There are several threads here on Lymenet. Gene mutations have to do with your own genes, what your body can and cannot tolerate, and what you can do to help.
Since most patients don't have a clue that they have parasites (doctors either), many just treat themselves. I did and discovered I had them. It wasn't dangerous for me, and if you check out THE PARASITE WARRIOR'S THREAD, you will find other people's experiences. Also, testing for parasites is a waste of time, IMO. The tests are incredibly inaccurate.
I really like Baileypup's suggestions: I would love to find someone who does Zyto. Also IMO, muscle testing is truly beneficial.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
If you've never treated for parasites (referring to your post) I vote absolutely go for it.
Weakened immune systems from chronic bacterial and viral infections allow these things to flourish- I believe, keeping one sick, harboring toxins.
You don't say whether you're going off antibiotics, but, I think Humaworm is a great place to start- quality product, and hits yeast, too.
Good luck!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm PMing you a few docs closer to you that helped some friends (no personal experience here).
Good luck, maybe there's a closer option.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Baileypup - Yes, I totally believe this to be true about the last 20-30% at this point. Last summer, I thought I was on my way...now I'm trying to find the way...haha.. I have never tried Zyto,,but I have the Ondamed (it looks similar). It ended up being a very expensive add on. I might try ART or muscle testing again although I am a bit of a sceptic here. ..However, if I wasn't willing to have an open mind I would not be as well as I am today.
Catgirl: I am happy to hear your MCS has improved with treating parasites and metals... I actually haven't treated for either of those yet...so maybe that will help me too...this proto is intriguing...are there any simple test? I think I have heard of this a long time ago but am not sure I was ever tested...perhaps some research is needed here for me...
Surprise: Yes, it looks like parasites may be a good next step to try...I am off of antibiotics at the moment...just recently...I have been off before but began relapsing after several months....
Judie: Thanks! Will respond via pm!
Posts: 109 | From North East | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
There is a test, but like all tests, I'm not sure how accurate it is (Fry labs). Here is a link about proto. Nefferdun narrowed down the symptoms on the link below (mine to a T).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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