My grandfather, one of the only people in the world besides my fiancee who believes I'm actually ill has offered me something extraordinary. He said he would pay in full for any treatment. So now, I am weighing my options, from the Hansa Center to stem cells, and I am completely at a loss. I want to go to the Hansa center because I am so utterly sensitive to any treatment. 500mg of Vitmin C makes me go off the deep end (neuro lyme, need I say more?) and become bed bound for days.
What would you guys suggest? What would you do if you could?
Posted by MDW005 (Member # 22706) on :
Vulpine, I "myself" would choose the Hansa Center.
I also have neuro lyme and very sensitive to chemical medication. From what I have read Hansa has a wonderful detox program and they approach your health to what the body actually needs.
I have not looked into stem cell to be able to form an oppinion.
Posted by Lymetoo (Member # 743) on :
Moving to Medical Questions where you will receive many more ideas.
Posted by blinkie (Member # 14470) on :
If it were me, I would go with stem cells. WOW! what an opportunity for you! Congrats, hope it works out for you.
Posted by sixgoofykids (Member # 11141) on :
I had a similar opportunity, my dad paid for me to go to Germany for Bionic 880 treatment. I did and got well. My blog is listed below. If you go to Oct. 2008, you will see the treatment I got there.
I used the Bionic for infections. Herbs for parasites. Used many detox methods - Hulda Clark liver cleanse, coffee enemas, alpha lipoic acid, cilantro, Dr. Natura, etc.
If he's willing to pay for stem cells, maybe he'd pay for the Bionic AND the Hansa Center .... those two together are still less than the stem cell.
I don't believe the stem cell is a first type treatment, I think it's more for residual problems .... not sure though.
Posted by BoxerMom (Member # 25251) on :
Read the threads on retroviruses before considering stem cells. I think with retroviruses, stem cells cause more problems. And we don't know what percentage of us may be dealing with retroviruses.
If you are sensitive to everything, consider detoxing for several months, and correcting the internal pathways with methylation and HPU/KPU protocols. Search here to go to www.betterhealthguy.com for more info.
Get adequate testing for co-infections and parasites. Know what you are dealing with!
Then consider trying antibiotics and/or antimicrobial herbs again.
Posted by sixgoofykids (Member # 11141) on :
Oh yes, I agree about detoxing and KPU. KPU was a big part of my recovery. That and the Bionic I believe were the two biggest helps.
Posted by Andie333 (Member # 7370) on :
What an incredible, wonderful thing that is; kudos for your grandfather!!
My suggestion would be to do your research and find the very best LLMD money can buy!
Andie
Posted by sixgoofykids (Member # 11141) on :
Another thing to look into is Dr. K in WA. Very thorough, addresses everything.
Posted by Andie333 (Member # 7370) on :
Kudos to your grandfather; what an incredible thing that is!
If I were you, I'd spend time to research the best LLMDs then go from there.
Andie
Posted by kidsgotlyme (Member # 23691) on :
If money were no object for my family, I would go to Dr. K in Washington.
Posted by seibertneurolyme (Member # 6416) on :
Hubby is not quite in the same situation -- has spent 10 years fighting this disease. Tried many alternative things and mostly oral meds. His catastrophic insurance should kick in in another couple of months after they process his last hospitalization -- he has now met the waiting period and the deductible.
Our decision was to find a new LLMD and go the IV route -- but we are only treating moderately -- only a couple of IV meds at a time and not 3 or 4 as some MD's do.
But I am still looking for an ACAM doc and another LLMD who specializes in coinfections -- if such a person exists.
Hubby was undiagnosed for a couple of years and then treated mostly with mono therapy -- a single drug. Once he treated babs aggressively he was able to tolerate multiple oral meds -- up to 5 at once. Unfortunately the neuro symptoms have continued to go downhill to some extent.
The Hansa Center did not work for hubby -- I would look for someone who had severe neuro symptoms who was successful with their treatment before deciding to go that route.
The doc is the main key to treatment in my opinion.
The other thing that can speed up or delay treatment by months or years is knowing exactly which infections you have. The coinfections play a huge role in the illness in my opinion. So make sure you are tested or given a trial of meds for at least bartonella and babesia as a minimum.
Bea Seibert
Posted by m0joey (Member # 13494) on :
First of all get tested with the new retrovirus serology test by vipdx. It is $250. If you are positive it really changes the complexion of your options as boxermom said above: stem cells do not make sense if you have an active retrovirus unless maybe you did chemotherapy first. I was on my way to panama before a few CFS researchers warned me about retroviral replication with stem cell division.
Btw if you do decide to do stem cells, there is a group of Lyme patients in panama getting umbilical cord stem cells ad we speak. This costs 17k and takes a week. If that is an effective option for Lyme, patients may not need to go to India anymore for the for more expensive, time consuming, and theoretically riskier with teratomas, embryonic stem cells.
Posted by janet thomas (Member # 7122) on :
I'd get an Igenex lyme IgG & IgM western blot kit mailed to me and take it to your primary and get him to order it. www.igenex.com
I'd find the best LLMD you could. While waiting I'd take 300-400 mg of doxy per day.
I'd assume you have Babs and Bart.
I'd treat Babs first with tafenoquine which should be available soon.
I'd use ketek (or biaxin), IM bicillin & flagyl for Lyme.
I went to a great LLMD in NY, I was almost better but I stopped because of the long trip and expense. He's about 1 hr north of NYC and his last name does not start with an H.
There are some very good LLMDs in CA too.
Most importantly I'd read everything I could, you must be very proactive.
But that's only what I'd do. I am not a doctor and this is not medical advice.
[ 08-29-2010, 05:46 PM: Message edited by: janet thomas ]
Posted by sammy (Member # 13952) on :
I would research and find a trusted, experienced, LLMD. Get tested for all possibly infections, test for hormones, heavy metals, everything. Treat with antibiotics, support with supplements, and detox. It would be helpful to work with an ND too.
Stem cell transplant would be the very last option. Try everything else first. Too risky for me.
Posted by psano2 (Member # 11711) on :
I would try stem cells.
Posted by sickpuppy (Member # 23846) on :
My vote=get to the best LLMD you can get to. Start there. A man as generous as your grandfather needn't blow the whole blank on one single over the top expense. It sounds like he's in it for the long haul and this is a loooong haul. See how things unfold.
Posted by Amelia (Member # 17677) on :
I agree with sickpuppy and sammy as well as so many folks here. I would get to the best LLMD you can find...
My mother had a stem cell transplant for another illness and it was harrowing. We were lucky she made it though. She is no longer with us as her illness took her and I would agree that should be a last resort.
Godspeed to us all with this...
Posted by dogmom2 (Member # 23822) on :
Hi Vulpine, just checking in. Have you decided which treatment plan to go with yet?
Posted by dogmom2 (Member # 23822) on :
bump
Posted by Tracy9 (Member # 7521) on :
I would try stem cells.
Posted by Maradona (Member # 24552) on :
Find the best LLMD (the one that will give you at least 2 strong antibiotics IV at a time and also treat co infections at the same time,and detox you tell you supplements that you need to take).Believe me people on the forum give allot of names for LLMD but there are not very many that do all aspects of lyme treatment.Don't be fool and go to the LLMD that treat with one antibiotic at a time they will fail you. And yes you have some good advice from six and other people in this forum if you have money go for them.In my opinion stem cell is just last thing to do when you beat the lyme and if you have damages then stem cell will recover organs nerves cells on the body but useless before you kill the bacteria six is right.