Lyme still CDC positive, repeated Igenex test –

[cavalier]

Got word today from a repeated Igenex test that I am still CDC positive for Lyme.

I had a Igenex test done end May of 2012, after doing several weeks of Hyperbaric O2 Therapy & I did AP then took a break for a month from AP as Igenex recommended at least 2 wks to get a more accurate result for the Lyme test.
That test showed I was CDC positive for Lyme 5 bands. I went back on AP after I got the test done.

This 2nd time I had just earlier that week of the blood draw completed my 8th Ozone IV for Lyme – majority of docs who do Ozone (some suggested longer for the amt.) but most said to do 6 to 8 ozone treatments & I should be in remission. These results are just for ozone, I had not yet done any high dose Vit. C IVs yet, I simply wanted to get only the ozone results measured, so I want to make that clear.

I am still CDC positive for Lyme IgM positive for 5 bands. Bands 34,39, 41, 83 & 93.

Between the 1st test & this one I have done rifampin, along with doxy & flagyl my stomach really rebelled on this & finally after landing in the hospital with small bowel obstructions had to stop. I got back on Zithromax but I still had stomach trouble – after mo’s of struggling with that – my doc then tried Bicillin injection we did 5 wk’s only but had no positive improvements. but IM was extremely sore for both of my hips & I could not sleep. The needle is horse needle & I had to self inflict all nurses who know the needle gauge got it how hard. Cost was 1,500 for just 5 wk’s & it was not a practical on-going solution if it was effective.

I do have heavy metals that are toxic & ozone is supposed to help detox those so is Vit C IV’s 100 grams but having those makes killing Lyme that much harder. I’ve done glutathione for about 5 months consistently in IV pushes. I also did detoxamin for 3 mo’s for detox & DMSA I am still doing weekly – I had only done a few weeks before but Dr C. feels trialing 6 wk’s of doing this with DMSA then retesting to see if my levels are any lower again with Doctor’s Data is wise & I agree. I am the product of 3 yr’s of 20 to 30 tablets a day of broken wall chorella & I did a lot of whey & Lactoferrin ahead of the dismal heavy metals test results & I have done other detox orals.

I needed to know & I knew it was not gone yet, but I had at least hoped I might have made some headway after all of this. It just goes to show you how DARN hard chronic Lyme can be. I had read that glucosamine which I used to take feeds Lyme & makes them more resistant & actually Bicillin only does the same, unless you combine with a cyst killer, which my doc had me only on the single AP, not combined.
I have done many herbs reported as being effective for Lyme – according to Dr K. & in that list of many for some time I did Ledum which is supposed to kill all forms. So this too is not only a bit of a let down but a concern as to why my immune cant get a better handle?

They could not get enuf blood to run the CD57 test this time my veins are tricky, so I need to come in to repeat that – I was a 67 last year. I have read 180 some say 120 is enuf to but ideally 180 means your immune can handle any residual lyme.

I am discouraged but I felt I should share this. Maybe I would or could still get there with ozone but it was 8hr’s each way to get to this doc & expenses to stay in a hotel etc. but wearing on me I got pretty run down at the end driving all the way by myself & back – playing catch up at the house when I got back just to go again I don’t think any therapy is effective, if you are run down IMHO.

I think getting tinadozale spelling for the 1st time a cyst buster in combo is smart & I need to go back to the doc again for this & I am waiting for Dr S. for the clindy 900 mg’s once a week. Continue the DMSA for detoxing metals & if they can get the vein the high dose Vit C. IV’s felt overall to be better suited for me. Keep up the Glutathione. Keep at it – week by week. I do know the big benefit to the venus fly trap for me is it raises my body temp which helps to fight the Lyme & I am getting a lot of cleansing in my stomach & it’s righting things there – so I will continue that for sure as a adjunct & Samento. I have the other Nutramedix items to rotate with.

I will do the LDA for my immune system to be able to operate better more effectively to help clear the Lyme but it’s also a help to SD. A doc I talked to yesterday who learned about this from a doc in Tx. says 100% help for allergies for Scleroderma he estimated from what he knows & he was very familiar with it – 50 to 80% improvement so that is my game plan. Come heck or what, I am determined still, despite how hard this is to get there.

My only issue with AP is my gut intolerances are quite severe & tolerance is hard for me anymore which is why & only why I have tried alternatives.

This is why I have asked if there is a LLMD who is willing to do a consult as I feel I need to be sure of what else could we be missing or to try?

Jill SD, Lyme CPn, Candida, Poss. Bart. many food intolerances & heavy toxic metals.

[Trudi]

@cavalier wrote:

I am discouraged but I felt I should share this. Come heck or what, I am determined still, despite how hard this is to get there.

Hi Jill–
I’m glad you are sharing. You have done so much, still being CDC positive for Lyme is most certainly discouraging. Your determination will get you there.

This is why I have asked if there is a LLMD who is willing to do a consult as I feel I need to be sure of what else could we be missing or to try?

My doctor is Dr. M and she does phone consults for a fee; she also had Lyme disease and is doing very well:
http://www.serenityhealthcarecenter.com/

Best to you in getting well–
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?

[cavalier]

Trudi – thank you for the doc’s info! Actually this doc isn’t that far from my hometown of Rockford, Il. which we do come up there still from time to time to see hubby’s family up there so it’s doable actually I am coming up there next week to see a doc in Beloit for LDA Low dose allergy – which can help & does help to modulate the immune system.

I will give this doc a call for sure for a consult & see from there, if we should take it further with a apptmt in person or not. The fact she had Lyme herself & got herself well is certainly a big plus for her patients. See you can still make lemonade out of lemons & I am determined to do just that & stay positive thru this crag mire. 😉

You helped to brighten my day!
Jill

[cavalier]

Trudi I should ask (if you don’t mind) has your doc been able to help you with your Lyme & RA? (in your opinion)

Jill

[Trudi]

@cavalier wrote:

Trudi I should ask (if you don’t mind) has your doc been able to help you with your Lyme & RA? (in your opinion)

Hi Jill–
When Dr. M. diagnosed me with Lyme in April 2008, she was not Lyme literate. She put me on a month’s worth of doxy and when it caused me unbearable pain, she sent me to a Lyme specialist. A year and a half later I could hardly walk and stopped seeing the LLMD. I’m pretty sure the Cat’s Claw was to blame. I continued for awhile with the electro-dermal doctor and then a chiropractor who gets quite a bit of Lyme patients. I stopped seeing the chiropractor in October 2012 because everything I was learning is that “time” was going to be the healer. I actually do have to see Dr. M. because she fills my BP medication and when I see her I’ll be going over quinolone damage, MTHFR mutation, and Lyme.

So, to make a long story short, I haven’t seen her for Lyme :)! In the last five years she has gotten very knowledgeable with Lyme disease. If I remember correctly, she had intensive training with Dr. H. Going through her website, she refers to herself as being Lyme literate. She is the owner of this health center.

If you end up consulting with her, let me know how it goes.

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?

[cavalier]

“she had intensive training with Dr. H. Going through her website, she refers to herself as being Lyme literate
If you end up consulting with her, let me know how it goes.”

I did see that reference Trudi mentioned. I will do that, let you know. Some doc’s get overwhelmed when they get the issues but actually it is not unusual for heavy metals candida autoimmune issues to come hand in hand with Lyme & any doc who know Lyme should be well aware of this 😉

Tx & I do welcome any other LLMDs who folks have used on here to share.
The southeast isn’t full of options.

Jill

[laurawm]

Jill,

I know I speak for so many of us here in saying that we really do care for you and want to see you well. You truly have tried so much and are fighting as hard or harder than us all. I’ve talked with you a little about the salt/C protocol I am doing – I really do think it is at least worth ordering the book to read of this man’s experience and the adjunct therapies he found helpful (ozone is high on his list, as is obviously, vitamin C) – http://www.amazon.com/Salt-Plus-Protocol-Lyme-Infection/dp/1463575483/ref=sr_1_1?ie=UTF8&qid=1376699535&sr=8-1&keywords=salt%2Fc

I am slowly making improvements with this protocol – though I know that my diet and naet/vibrational (http://www.alternativetreat.com/naet.html) treatments are also a part of it all as well as the stem cell treatment. I eat no sugar, fruit, grain, or even starchy veggies. Bacteria and fungus have to have simple sugars to live and reproduce. If you do not feed them, they have to die. I am also green juicing daily, drinking kombucha, raw milk kefir (cannot tolerate regular raw milk – only kefir that has had the casein broken down), and making my own cultured veggies that I eat with two meals a day. I am still doing the EDTA for chelation which I know is helpful as I regularly pass mucous after taking these. I have also done ozone water colonics and will soon try vaginal ozone insufflation. I don’t know if any of these things might be worth looking into, but I wanted to mention what I feel is helping me most as I would hate for something to be a potential help and not have said something.

One other thought I’ve had is that I believe it can take a good amount of time for antibody levels to respond to lowered pathogen levels, so perhaps it is not so surprising that your test is still the same. Do you think there is any possibility that your current vein difficulties are a herx response to all your recent treatments, or does your intuition tell you that you are getting worse?

I wish you all the best always,
Laura

[PhilC]

Jill,
@cavalier wrote:

I am still CDC positive for Lyme IgM positive for 5 bands. Bands 34,39, 41, 83 & 93.

Keep in mind that this test does not test for the presence of Lyme bacteria. It tests for the presence of antibodies to parts of the Lyme bacteria. You could be totally cured (I’m not saying you are) and the test could still come back positive since the antibodies will remain in your blood for some time before finally disappearing.

By the way, newer tests are in the works that will detect the actual Lyme bacteria. It will be a major breakthrough when such tests become mainstream.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[cavalier]

Interesting thought Phil! BTW you mentioned in a post the other day a type of Doxy that is NOT so hard on the stomach. I should have written it down but had to run & now cant remember where I saw it at. May I plse ask you which doxy that is? It is something I need to ask my docs about. My doc reads this test as IgM positive means to him a active infection – this is also what I read from a LLMD article that these bands themselves other than band 41 which isn’t a specific lyme spirochete but could be a coinfection or anything that has a spirochete that the other 4 bands are specific to the Lyme spirochete itself out of 9 possible bands that are specific to Lyme only. Since my SD came on shortly after I got bit by the ticks with the red ring rash in 05, the point of this is – I am also assuming since my SD symptoms got worse & my SCL70 test for SD in 6 wk’s jumped 40 points to a all time high from the same lab as the one 6 wks earlier – It’s possible folks that you get worse in symptoms & #’s climbing before you get better?
I read like you that some sites say this is the antibody well will post what I was reading from Igenex- It seems to indicate though like my doc feels that the infection is ongoing still. Million dollar question is will those #’s fall quickly or not as the infection lowers?
Igenex Western Blot Break Down by band
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (Many LLMD’s say if this band alone is positive, you have lyme – see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
*23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain – Has cross-reactivity with several different types of viruses
*31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
*34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
*39 is a major protein of Bb flagellin; specific for Bb
*41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas – see link above “Western Blot Made Easy” for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia

IgG and IgM are two completely different antibodies.

IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.

[cavalier]

Just to clarify I gradually reduced my Vit C by the way I didn’t just stop cold turkey.
It is a temporary stop for now.
Jill

[cavalier]

I also forgot to say I am doing DMSA to chelate to remove the heavy metals from Dr C. am into my 2nd week. I have 4 more weeks to go & we then will retest then by the same lab.

A doc in Calif. is taking look at my salvia. I hope it gives him some clues for inflammation.

Jill

[richie]

Hi–From what I read -plenty of issues at Igenex with positives and their abundance –while I have no issues that would use their services –certainly there has to be another lab for comparison-
richie

[PhilC]

Hi Jill,
@cavalier wrote:

BTW you mentioned in a post the other day a type of Doxy that is NOT so hard on the stomach. I should have written it down but had to run & now cant remember where I saw it at. May I plse ask you which doxy that is?

It is doxycycline monohydrate.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[cavalier]

Thanks Phil for the doxy info. Richie this is the lab my LLMD prefers as do some other doc’s, but I have had abnormal readings before from other labs as well.
best-
Jill

[laurawm]

Hi Jill,

I’ve tried several fermented veggie recipes and am still experimenting, but essentially I always start with cabbage and then add a little sea salt and other veggies/herbs such as kale, carrots, dill, garlic and ginger. My next batch I plan to try to add some hot pepper. My husband bought me a crock similar to this: http://www.amazon.com/TSM-Products-Fermentation-Liter-capacity/dp/B002UUT4CI/ref=sr_1_3?ie=UTF8&qid=1376872124&sr=8-3&keywords=fermenting+crock

I started with recipes from the Body Ecology Diet book and you can also find recipes (of all sorts that work on our type of diet) of all sorts on their website: http://bodyecology.com/

[Author]

Posts