lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Ok, I sucked it up and sacrificed beyond belief to see one of the best LLMD's in NY (I'm in the Southeast).
I have been doing their protocol for 7 months...with little change in symptoms. I still have low grade fevers everyday, unrelenting fatigue and brain fog.
I tested myself for KPU/HPL through Forrest Health (using a Vitamin Diagnostics test), because all of the symptoms fit. My levels were high. However, my LLMD's office doesn't address this.
I have high HHV-6 and Coxsackie B3 levels that are not addressed.
Genetically I cannot detox and cannot tolerate many medications...the more they add, the sicker I get. The only time I feel ok, is immediately after a Glutathione IV.
I have taken every single supplement and medication that their office has recommended. I am currently taking 53 different meds/supplements!...not 53 pills total, but 53 different meds/supps EACH DAY...and not getting better.
My husband has made miraculous improvements over the past few months...and he has prior steroid and Cellcept use for over a year...while I am stuck...much like RZR's previous post today.
I feel like a Dr K type Dr would help me...combined with a little Dr Montoya from Stanford (due to the high viral #'s). But I cannot make an appt with Dr K happen since a 5 day stay is required...and I am on Dr Montoya's waiting list (which is 4 yrs long).
During my son's DAN! Dr appt last week, I caught myself wishing I could just see him instead (I don't have autism) because, I may not make anymore progress than I am currently making, but at least I wouldn't be dead broke in the process.
posted
WOW!! The first thing I'd do it dump out 2/3 of the meds/supplements. That is WAY too many different things to be taking. The mix could be overtaxing your system. (esp since you are unable to detox)
I'll let others give advice on Dr specifics.
I wish you the best in what you decide to do!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I agree, too many meds and supplements. re-evaluate and maybe try detoxing for a bit before starting back up on less.
Posts: 620 | From Ks | Registered: Oct 2011
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
It seems it's time to switch LLMD's and ditto what Lymetoo said about cutting way back on what you're taking especially since you are not a good detoxer.
The fact that glutathione helps pretty much proves that. I also have KPU and in addition to that I have MTHFR (homozygous C677T) and have HLA-DR genotypes that can't detox Lyme or mold.
I wouldn't doubt you have more detox issues beyond the KPU. The difference w/your husband is probably genetics. Is he also taking 53 different things?
Do your homework and choose a LLMD that focuses on detox. I believe there are very good ones closer to you.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I guess I was too intimidated to question my over-treatment because I'm new to all of this and absolutely no expert.
tickled1-he's on about 35 things, but he never has a problem taking ANYTHING. In fact, he was on IV abx for 4 months and NEVER herxed...just kept getting better and better.
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
lax mom - so sorry for your frustration and struggles. I think you are right about Dr. K being able to help you....especially with the issues you have. Just so you know, they no longer require a 5 day stay. Call his new office and inquire.
I have to say my unrelenting fatigue has lifted and my energy has soared since I have been treating parasites (5 months now). This is Dr. K's specialty. I am a patient of Dr. K's. But haven't seen him in about a year. I found someone in PA who is a long-time follower of his and I've been happy with the progress I'm making. He does ART testing and follows all of Dr. K's protocol. Still a ways to go, but I feel like I am on the right path.
Good luck as you plan your next steps.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I think we may have the same doc. Does he have you on herbs only, or abx? I take some of what he recommends, but some stuff I couldn't tell if it was working or not, so I just quit taking it.
It sounds like he's trying to build up your immune system with a bunch of supplements. Can you try taking the Core to help you with KPU? I just took it on my own to add in some of the stuff in the Core and it's helped me (forgot to ask him about KPU last visit).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I forgot to add, I feel like there is a method to his madness (figure of speech). He told me that they basically try everything they can for patients. My guess is if you go downhill, it becomes a good time to retest you for other co infections.
I have been improving every month with bart & babs, but I feel like there is some other unknown bug under the surface.
I'm with you though, sometimes I wish I had a doc who was open to Dr. K's treatment too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lax, can you chelate heavy metals?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Catgirl: I've tried detoxamin suppositories with chemet and chlorella...it makes me feel like I am absolutely dying for several days after.
In a perfect world a Dr would combine the best of my LLMD with the best of Dr K.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Agree with Tammy. Go after parasites and be persistent. Chronic Lyme usually has an underlying G.I. parasitic component. Google parasite symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Wow, I can't believe you are on so many supplements! That seems like it would really be too much for anyones system. Taking that many there is no way you would know if one wasn't agreeing with you.
I just posted on another thread about a great lyme site where you can post questions on a webinar and receive treatment advice. There is a ton of wonderful info on the site as well.
Sometimes what some perceive as the best are not necessarily the "best" one for you. I for one am outraged at the amount that some of these "best" doctors charge. On top of that they tell you that it is necessary for you to be on a ton of supplements that of course their office supplies. Some of that just doesn't sit right with me.
Don't give up, you will find the right one. Where are you located?
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
lax mom, As Tammy suggests, contact Dr. K.'s new office, Sophia Health Institute, it is a delightful place; or one of the ART practitioners on the East Coast. You will be so much better off and getting a sense of direction. www.klinghardtacademy.com
Wishing you the best.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Gigi and Tammy: I called Dr K's new office. They emailed me new pt info that said the 5 day visit was required.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That sucks you can't detox metal. How does the doc propose you get rid of it? What about binders? Gigi has the best ideas here (metal queen).
I'm not sure our doc has a full grasp on the whole parasite issue yet, or if he does, he may be limited by the state's medical board to fully treat. NY has insane guidelines the docs have to follow.
I've been working on parasites on my own for a few months now. I'm seeing some improvement because of that alone (improvement while doing anti parasitcs and after). Have you tried humaworm, or parastroy?
IMO, treating for parasites has helped me with babs too. Maybe bart as well. When I don't take stuff for parasites, my babs symptoms seem to pop out more. But I've also been chelating metals for several months, so that has helped too (dmsa). Does he just have you on chlorella for this? Maybe more binders would help?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I forgot to add, what about protmyxzoa? Have you tried a low fat diet? I tested negative for it but the low fat diet really helps me (worth doing, IMO).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Catgirl: I do think he is very limited by the NY medical guidelines.
I ordered Humaworm. It's on its way.
For chelation I was on Detoxamin suppositories, Chemet and Chlorella...so I guess the only binder in there was Chlorella.
I haven't tried a low fat diet...I haven't been tested for protomyxzoa, but I crave fats and sugars. (so maybe protomyxzoa is an issue along with yeast).
posted
Lax mom-I wish I knew the answers for you. I am still very sick too and have been under treatment for awhile now. I share your frustrations. I just wanted to show my support for you, as you have always been so kind and gracious to me on here.
Feel free to PM if you need to. All the best to you, Jess.
Posts: 651 | From ct | Registered: Sep 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Thanks so much for your kind words of support chastain...I really appreciate it.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tammy N, your mailbox is full. I'm needing info on PA, DR K understudy. Help
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Have you tried castor oil pack for the liver? It could really help with detox.
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
MichaelTampa: I haven't tried that. I need all the detox help I can get.
I have some good news!!!!! I thought I was up a creek since I saw the expert on the East Coast and was getting worse. You guys encouraged me to change things up.
I am soooo excited and hopeful. I called Nurse A R who is in a clinic in WA under DR A D (she was not taking new pts)...studied with Dr K. Anyway, they do Skype appts... I have one scheduled soon.
posted
Great news that you have an appointment to help address your various issues. I don't think throwing more of anything at your body is wise, until you get your detox pathways open. The fact that IV glutathione works for you is a good sign that you can detox with help.
When I read your initial post (prior to reading you had high viral titers), I immediately thought viral issues could be causing the low grade fevers, fatigue, and brain fog. Sounds like you know these may be viral and you should be on an anti-viral. Prior to lyme, I had CFS and there was a distinct difference in symptoms between lyme/babesia and viral, and the viral symptoms match what you've described.
I don't understand why your famous doctor will not prescribe an anti-viral like Valtrex or Valcyte. I just started on Valtrex because viral issues surfaced, and I feel a whole lot better in just a few days. When I asked my LLMD, she had no problem prescribing it - I don't see why yours wouldn't do the same, especially with high viral titers.
Posts: 964 | From san diego | Registered: Oct 2009
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Tammy N.,
Your mailbox is full. Would love the name of your doc in PA. Thanks!
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
gigi, the last time I checked Dr K website, maybe a month ago, the only practioner(s) listed were across the ocean. I'm glad to see the site updated with docs in the US.
tickled1, look at the website gigi posted. PA trained docs are listed.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thanks map. I'll check it out
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I feel your pain....hope we both start feeling better.
Let us know how the skype appt. goes.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
baileypup: My LLMD hasn't addressed viruses because "I am already dealing with so much"
I was on my way to a CFS diagnosis right before finding out I had Lyme and a bazillion cos.
RZR: thank you. I will definitely let you know what happens.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on Lax! Go for it. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
I ditto the idea of trying the low fat diet eating. You can herx from the low fat eating at first. But some of us that the reg. lyme treatment didn't work with, are now feeling MUCH better with eating whole foods, lower fat.
Start out writing down the fat grams of what you eat.... then slowly start eating less of fat grams. Whole foods are easy.
No need to take supplements, no cost involved... just whole foods eating.
Pretty simple and it works for some of us. Try it for a month.... ?? nothing lost if it doesn't help you.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
posted
lax mom. Before you go changing your diet to address FL1953, have you taken Plaquenil before? You may be on or have taken in the past a medication that treats FL1953.
Viruses....Usuaslly when the Borrellia and coinfection load comes down viruses subside on their own to a degree. Then herbals such as Byron white can be used to treat what still remains.
You are in very good hands. I wouldn't jump ship yet. It takes a very long time to heal from these illnesses.
I hope you get relief soon!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
| IP: Logged |
posted
(FYI: Plaquenil doesn't really treat FL1953... malarone is the drug of choice instead of Plaquenil) But breaking down the biofilm for ANYTHING to work better is the concept behind the low fat eating.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
A low-fat diet may increase detox (toxins that the body can't eliminate are often stored in fat), so be careful with the low fat diet...may need to take binders when you cut the fats to help reduce the "yukkies" from detoxing...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
Pm sent
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I tried 3 LLMD's, and the last one was the best fit, and I made the most progress. He did testing the other ones did not.
You don't have to take 53 supplements. For HHV6 use Transfer Factor PlasMyc. My labs came way down, but that wasn't what was making me so sick. Babesia and Lyme were, but those levels have come down, too, with abx, and I feel much better.
Find a good LLMD that fits your needs. Each one has a different approach. Don't give up!
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
unsure: I've been on Plaquenil for the past 7 months.
hadlyme: I can't tolerate Malarone, Mepron nor Cryptolepis So, I have to get a handle on my diet. My inflammation is through the roof.
Razzle: I get jittery beyond belief when I stop eating fatty foods. What are some binders? I think the only one I have is chlorella.
LymeMom Kellye: thanks for the PM.
CherylSue: what testing did your last LLMD do, that the others didn't?
posted
Did you just have the MTHFR genes tested or did you do the full panel for Methylation ( Yasko or 23andme ) ?
Posts: 250 | From canada | Registered: Oct 2007
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I have MTHFR C677T ++, Lyme/Chlamydia Pneumonia/ very high Lead etc. and have always had an AWFUL time with detox. Feel like I am being poisoned. I did the Yasko genetic panel and I had multiple blocks in my Methylation Cycle which caused Glutathione depletion . Glutathione is the main detox substance we need. i also had severe B12 deficiency DESPITE my blood levels being high. If you are taking the "wrong" kind of B12 it will make you feel awful, and many of the supplements will make you feel bad if your detox pathways have genetic glitches in them. I started off just adding in all the 'right' kinds of B12 and Folate and it made me very sick. I have had to back right off and start again very slowly..... once you add in the B12/Fol the Methylation pathways open up and start to dump all the toxins.....makes you feel awful. Some people need just minute amounts to begin with. Doing the genetic testing for the full Methylation pathways is the best thing I have done.
Posts: 250 | From canada | Registered: Oct 2007
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
What is the "right" kind of b12?
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Annelet: OMG..."feel like I'm being poisoned" that describes my experience exactly!
Is it methyl B12 or something else? Methyl B12 shots wipe me out...but I'm still doing them in hopes they will start to help.
My PCP did the Spectracell micronutrient testing and despite doing Glutathione IV's, suppositories and liposomal Glutathione, NAC and Alamax...my Glutathione is STILL low.
This all just feels so hopeless when your darn genetics are screwed up.
posted
Lax mom, I was in the same position as you a few months ago. I had been treating with antibiotics for 2 years. I had been to the same doctor in NY that you are seeing and felt that I wasn't improving. I felt like there was no hope but I just couldn't give up. I decided I needed a new approach.
I started reading about Dr. K and his protocols. It was very overwhelming at first so through this board, I got a recommendation for a dentist that does Autonomic Response testing at NIHA in Washington D.C.
This has changed my life and my whole perspective on illness
I am no longer on antibiotics. I am treating my entire body as a whole, no longer trying to figure out what infection is causing what. I feel the best I have in years!
I also felt awful when trying to detox heavy metals. I have the MTHFR genes but with the interventions I am receiving at NIHA, I can now tolerate it much better.
Here's a list of some of the things I am doing: ozone treatments, parasite treatment, colonics, nutrition, cavitation treatment, chi machine, enemas, fungal sinus treatment, EMF reduction, biofilm treatment...
I now feel like I'm finally on the right path to healing. I've realized that we can't just deal with Lyme and co in isolation, we have to treat the body as a whole. Once we address the organs and systems that are weak in our bodies, we can truly begin to treat Lyme and everything that comes with it.
I am not recommending that you pick up and come to Washington D. C. This board can help you find some integrated doctors near you. It was hard for me to implement these things into my life at first but my improved health keeps me motivated to continue. I am not 100% but about 90% so
I have a little ways to go but I finally have HOPE!
Please PM me if you would like specifics.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
| IP: Logged |
posted
The "right" kind of B12 could be Methyl, Hydroxy or Adenosyl, depending on your Methylation Genetics.
If you have low Glutathione ,and you give Glutathione by IV or patch, then the body is fooled into thinking that it doesn't have to make its own..... so it doesn't and the levels stay low. When you fix the Methylation blocks in the right order, the pathways open, detox happens and the Glutathione levels sort themselves out.
That all makes it sound very quick and easy....which it is not... but the principle is right. I was very fortunate to have the help of Dr Rich Van Kronynenberg, who is one of the main experts on Glutathione depletion and CFS. He put me on the right path with this. Tragically he died suddenly in his sleep about 3 weeks ago. Google his work.
Posts: 250 | From canada | Registered: Oct 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/